Cheshire & Merseyside Transforming Care for People with Learning

Cheshire & Merseyside Transforming Care for People with Learning Disabilities Plan 2016 - 2019 1

Cheshire & Merseyside Transforming Care for People with Learning Disabilities Plan 2016 - 2019

Final Version number: 19 First published: February 2016 1st Resubmission 21 3 16 2nd Resubmission 11 4 16 3rd Resubmission 20 5 16 Final Submission 24 6 16

Senior Responsible Officers: Alison Lee, Chair, Senior Responsible Officer Cheshire & Merseyside, Transforming Care Programme Board, Accountable Officer, West Cheshire Clinical Commissioning Group

Jonathon Hurley, Co-Chair, Cheshire & Merseyside Transforming Care Programme Board, Expert by Experience, Cheshire and Merseyside Self Advocates Group.

Sue Wallace Bonner, Deputy Chair Cheshire & Merseyside Transforming Care Programme Board, Director of Social Care, Halton Borough Council

Prepared by: Jackie Rooney, Head of Cheshire and Merseyside Transforming Care Programme. On behalf of Cheshire & Merseyside Transforming Care Board & Strategic Transformation Partnership (STP) Michelle Creed, Deputy Director of Nursing & Quality, NHS England North (Cheshire & Merseyside) Jane Lunt Chief Nurse Liverpool CCG on behalf of North Mersey Local Delivery System John Edwards Mental Health Commissioning Service Manager Integrated Commissioning Team St Helens Chamber of Commerce and Lisa Birtles Smith Clinical Lead Learning Disability Halton CCG on behalf of Mid Mersey Local Delivery System Catherine Mills Clinical Projects Manager NHS South Cheshire and Vale Royal Clinical Commissioning Groups and Norma Currie Commissioning Manager (Partnerships) Wirral CCG on behalf of Cheshire/Wirral Local Delivery System

Classification: (OFFICIAL)

1. Introduction 1.1. Purpose This document outlines the Cheshire & Merseyside (C&M), (Unit of Planning) local plans aimed at transforming services for people of all ages with a learning disability and/or autism who display behaviour that challenges, including those with a mental health condition, in line with Building the Right Support – a national plan to develop community services and close inpatient facilities (NHS England, LGA, ADASS, 2015). The plans cover 2016/17, 2017/18 and 2018/19.

1.2. Aims of the plan

The C&M plans will demonstrate how through coproduction commissioners, stakeholders and system partners will implement the national service model by March 2019 and close inpatient beds, starting with the national planning assumptions set out in Building the Right Support. These planning assumptions are that no area should need more inpatient capacity than is necessary at any one time to cater to1:

 10-15 inpatients in CCG-commissioned beds (such as those in assessment and treatment units) per million population  20-25 inpatients in NHS England-commissioned beds (such as those in low-, medium- or high-secure units) per million population

These planning assumptions have been used by local commissioners to inform the process of planning. They are creative and ambitious underpinned by the Cheshire & Merseyside Learning Disability Health Needs Assessment 2016 alongside a strong understanding of the needs and aspirations of people with a learning disability and/or autism, their families and carers that has been informed through coproduction, and on expert advice from clinicians, providers and wider stakeholders.

The organisations signed up to the delivery of this plan are committed to seeking the best approaches to delivering the principles and objectives in the national service model. However each local geographical area will need to develop a local delivery plan that meets the needs of their particular population. These delivery plans will need to reflect the preferred models, local approaches and provide a suitable ‘fit’. As such there cannot be a ‘one size fits all’ solution. There must be local discretion as to the best way to deliver improvement according to local need.

1.3. National principles

The Cheshire & Merseyside Transforming Care Partnerships (CMTCP) have tailored the plans and they are consistent with the following principles:

a. The plans are consistent with Building the right support and the national service model developed by NHS England, the LGA and ADASS, published on Friday 30th October 2015.

b. The plans focus on a shift in power to ensure people with a learning disability and/or autism are citizens with rights, who should expect to lead active lives in the

1The rates per population will be based on GP registered population aged 18 and over as at 2014/15

community and live in their own homes just as other citizens expect to. We will build the right community based services to support them to lead those lives, thereby enabling us to close all but the essential inpatient provision.

To do this we have coproduced with people with a learning disability and/or autism and their families/carers the transformation plans, and the plans will give people more choice as well as control over their own health and care services. An important part of this, is through the expansion of personal budgets, personal health budgets and integrated budgets

c. The plans have strong stakeholder engagement: providers (inpatient and community-based; public, private and voluntary sector) have been involved in the development of this coherent plan. Wider stakeholders have been engaged in the development of the plans, for example, Employment, Housing, education, third, voluntary and independent sector providers.

Summary of the planning template

2. Planning template 2.1 Mobilise communities

2.2 Governance and stakeholder arrangements The footprint covering Cheshire & Merseyside has a historical track record of delivering large scale change, such as: Vascular and major trauma. It is co-terminus with Cheshire & Merseyside NHS England footprint and has a population of 2.5 million. There is close co- operation with adjacent areas, for cross boundary patient flows, for example Greater Manchester, Lancashire and Midlands areas.

Cheshire & Merseyside (C&M) wants to build on this history of large scale change. The organisations signed up to the delivery of this plan are committed to seeking the best approaches to re-shaping services and delivering the principles and objectives for people with LD and/or autism and/or behaviours that challenge, in line with Building the Right support.

We have an historic Learning Disability Network that has undertaken much work from the Winterbourne View Recommendations over the past 3 years. Discussions through this network resulted in an agreed consensus to progress developments via one Transforming Care Partnership or unit of planning across the Cheshire & Merseyside footprint to ensure commissioning at scale with three geographical collaborative commissioning local delivery systems outlined in Table 1.

However we are mindful that each local delivery system will need to develop a local delivery plan that meets the needs of their particular population. As such there cannot be a ‘one size fits all’ solution. There must be local discretion as to the best way to deliver improvement according to local need. Therefore local system delivery plans will reflect the preferred models, local approaches and provide a suitable ‘fit’ in line with Building the Right Support.

Table 1.

C&M Strategic Unit of Planning

Commissioning CCGs Local NHS England NHS Total Systems Authority Provider Population Local System1 Wirral Wirral Cheshire 1,078,886 Cheshire/Wirral West West Wirral Population Cheshire, Cheshire & Partnership East Chester NHS Cheshire, East Foundation South Cheshire Trust Cheshire Vale Royal Local System 2 Halton Halton North West 5 Boroughs 701,952 Mid Mersey St Helens St Helens Specialist Partnership Population Warrington Warrington Commissioning NHS Knowsley Knowsley Hub Foundation Trust Local System 3 South Sefton Merseycare 786,383 North Mersey Sefton Liverpool NHS Trust population Southport & Formby Liverpool

The stakeholder engagement affirmed their agreement to a common Transforming Care Strategic Partnership, looking at 3 levels of commissioning and transformation: • within LA borough/CCG, (commissioning system) • adjoining CCG's/Boroughs e.g. inpatient facilities (across 1,2 or 3 commissioning systems) • Whole footprint. (TCP)

Over the last 3 months, the commissioners have worked closely together and also with their providers towards this agenda. The governance for this TCP is cited in section 2.3 and adopted between the organisations. The TCP configuration has the full support of NHS England Cheshire & Merseyside (C&M) and ADASS.

The C&M Transforming Care Partnership has a good understanding of the local economy and current providers, statutory, independent and voluntary sector Contracts. This includes consideration of: • Service user preference and expectation • Existing CCG/LA collaborative commissioning arrangements • Current clinical pathway service delivery • Joint purchasing arrangements between some CCGs • Joint CCG/LA arrangements, including governance for joint decision-making • Excellent CCG/Provider working relationships • Provider financial viability and clinical sustainability • Requirement to work collaboratively with Lancashire and Greater Manchester TCPs in light of the acquisition of Calderstones by Merseycare NHS Trust and as a commissioner of services from 5 Boroughs Partnership NHS Foundation Trust and Cheshire and Wirral Partnership NHS Foundation Trust

*Note: it is noted that as plans for local authority devolution evolve and as the market develops the current local delivery system configurations outlined above may change as this programme of work progresses.

2.2.1 Alongside this there are existing forums for Health and Social Care Commissioners, Learning Disability providers, local councillors, Police, Education, Safeguarding, Housing and Employment have formal arrangements in place regionally and locally including the C&M Learning Disability Network, Learning Disability Partnership Boards, Joint Leadership Management Teams and Health and Wellbeing Boards which the local delivery systems will use as points of reference.

2.2.2 The three local delivery system footprints currently mirrors patient flow in accessing local services and reflects that of the main C&M NHS Mental Health and Learning Disability Providers, which are: • Cheshire and Wirral Partnership NHS Foundation Trust (CWP) • 5 Boroughs Partnership NHS Foundation Trust (5BP) • Merseycare NHS Trust

Whilst stakeholders across the 3 C&M TCP commissioning local delivery systems have historical relationships with CCG’s and Local Authorities further work is required to understand the impact at a local level of the acquisition of Calderstones by Merseycare NHS Trust and their future capacity to delivery locally commissioned services and the impact of

Greater Manchester TCP plans on C&M TCP as a current commissioner of services from 5 Boroughs Partnership NHS Foundation Trust.

2.2.3 The TCP Plan is cognisant of and has considered the range of integrated programmes across health and social care which include developing different commissioning arrangements such as:

• Caring Together (Cheshire East/NHS Eastern Cheshire Clinical Commissioning Group) • Connecting Care (Cheshire East Council, Cheshire West and Chester Council, NHS South Cheshire Clinical Commissioning Group, NHS Vale Royal Clinical Commissioning Group) • West Cheshire Way (Cheshire West and Chester, NHS West Cheshire Clinical Commissioning Group) • Wirral 2020 (Wirral Borough Council, NHS Wirral Clinical Commissioning Group) • Healthy Liverpool Programme (Liverpool CCG, Liverpool Local Authority) • Staying Local and Together (South Sefton, Southport & Formby CCG’s and Sefton Local Authority • One Halton (Halton CCG and Halton Borough Council)

These plans focus on; choice and control, personal health budgets, bringing care closer to home, improving access to 7 day services, 24 hour access to some services, urgent and emergency care for the population as a whole. The plans will not duplicate but complement local vision and requirements.

2.2.4 Partnership working between Clinical Commissioning Groups (CCG’s) and Local Authorities (LA’s) is evident. All C&M CCG’s and LA’s are co-terminus except NHS South Cheshire CCG and NHS Vale Royal CCG who have a shared management structure working across two local authorities and South Sefton and Southport & Formby CCG’s who have a shared management team that works across one local authority.

2.2.5 Within Social Care Commissioning, all nine local authorities have arrangements in place whereby providers can talk directly with commissioners via regular provider forums or equivalent meetings. For Social care commissioning arrangements - there are a number of care providers within the area who support of people with learning disabilities and/or autism with behaviour that challenge from the use of direct payments to 24/7 care packages. For example Alterative Futures, Brothers of Charity, Carers support network, Registered social Landlords and Job Centre Plus for employment, education and training opportunities. The aim will be to engage with current providers whilst also developing and engaging with market providers of services, in particular the third, independent and voluntary sector.

2.2.6 Commissioning within the local delivery systems reflect Placed Based Care models; with some areas leading new ways of commissioning. For example:

Cheshire/Wirral local delivery system: • Cheshire West and Chester and the two CCGs within the area are part of a national demonstrator site for Integrated Personal Commissioning, with a focus on people with learning disabilities and/or autism. • Cheshire East, Cheshire West and Chester and the four Clinical Commissioning Groups within these authorities, form the Cheshire Pioneer site. www.cheshirepioneer.co.uk • Cheshire has recently established a collective forum for Learning Disability inclusive of the Clinical Commissioning Groups, Local Authorities and CWP. CWP has put forward proposals of a model that embraces the key principles of Transforming Care,

including potentially closing one of the two inpatient units within the sub-region.

Mid Mersey local delivery system • Mid Mersey has a long established track record of developing and delivering a common model of care for Learning Disability via a Four Borough Commissioning Alliance. Established in 2010, the Alliance co-ordinates commissioning with clear performance measures and meet regularly with its provider, 5 Borough Partnership NHS Trust to review service delivery and performance.

North Mersey local delivery system:  Has an established track record of working on large scale change such as vascular, trauma and cancer services.  The North Mersey Commissioning delivery system is currently building on and developing collaborative commissioning opportunities.  Liverpool City Region (Liverpool, Knowsley, Sefton, Halton, Wirral and St Helens Local Authorities) are working on a large scale change programme which includes services for people with learning disabilities.

2.2.7 The Transforming Care Partnership Board are cognisant of some key commissioning challenges and opportunities which need to be further developed in line with Building the Right Support (2015); such as pooled, integrated budgets and person centred delivery of care. Other challenges include:

• Within NHS CCG commissioning, the 3 current NHS LD providers are commissioned on a block contract basis; in some instances as part of the mental health block contract arrangements. Work is ongoing to separate out LD spend from a block contract agreement in order that a cost can be attributed against the new and bespoke services for people with learning disabilities. • A variance in pooled budget arrangements across the TCP. • Strengthening connections and working arrangements with Children and Family Services, commissioners and providers. • An overlap on the geographical borders with Greater Manchester sharing some inpatient provision from CWP and commissioning of services from 5 Borough Partnership NHS Foundation Trust • Implications and impact of Greater Manchester TCP plans on C&M TCP as a current commissioner of services from 5 Boroughs Partnership NHS Foundation Trust and CWP. • Due to geographical configuration of South Cheshire, some patients are placed in services provided in Staffordshire and Wales as this is closer to their home. • Consideration to commissioning arrangements moving forward will allow placements at scale within and across the Cheshire Mersey footprint

2.3 Describe governance arrangements for this transformation programme

To ensure robust governance arrangements C&M Transforming Care Partnership Board will develop the Strategy for People with Learning Disabilities and will ensure that one unified Plan is delivered consistently with equitable access and equity of provision across the strategic footprint.

Alongside this as described in section 2.2 there will be local variation were local need dictates to meet population need. This will be brought together in the 3 local delivery systems (Cheshire/Wirral, Mid Mersey and North Mersey) to oversee and support the transformation and delivery of learning disability service provision across the Cheshire and

Mersey footprint at a local level as outlined in Table 1.

This principle is aligned to the Cheshire & Merseyside Strategic Transformation Partnership (STP) ways of working and the C&M Transforming Care Plan is now aligned to deliver for the STP programmes of work.

This governance arrangement will include good communication and engagement channels as described below, and provide a way of listening to and coproducing plans with people with lived experience of services, including their families/carers; with an aim to have a shift in power in the way services are delivered.

To achieve this CCG Accountable officers have nominated one Senior Responsible Officer (SRO) to take a collaborative leadership role on behalf of the system. The C&M Self Advocate Group has nominated an expert by experience to co-chair the Board. Local Authorities have also nominated one Director of Adult Social Services lead as co-chair. Alongside this C&M Transforming Care Partnership Board have identified key partners nominated to lead the programme of delivery.

 Alison Lee, Accountable Officer, West Cheshire CCG has been nominated by the Cheshire & Merseyside CCG Accountable Officers to act on their behalf as the Senior Responsible Officer for this programme of work.  Jonathon Hurley (Expert by Experience) has been nominated by the C&M Self Advocates group to support the SRO as Co-Chair of the C&M TCP.  Sue Wallace-Bonner, Director of Adult Social Care Halton Council has been nominated by her ADASS peers to be deputy chair.

2.3.1.The national governance structure to support delivery of the national plan is outlined in Table 2

Table 2:

2.3.2 The local governance structure to support local delivery of the national plan is outlined in Table 3:

Table 3

The C&M TCP board is accountable to carers and individuals with a learning disability, C&M HWBBs, C&M STP Board and NHS England North TC board for delivery of its local plans. Critically each delivery system will engage with, seek support from and approval of plans from the relevant local governing bodies/committees , learning disability partnership boards (LDBPs) and Health and Wellbeing Boards. This will include engagement with children and young people services and strengthening networks in the local systems and across Cheshire & Merseyside.

C&M has a strong history of working in partnership to improve care for people with learning disabilities across the C&M footprint which has enabled many of the key partnerships to be brought together and engage in the development of this plan. Key partners involved in the TC programme and represented at the C&M TC board include;

 Service users, Experts by experience, family members, self-advocates  Health and Social care commissioners; - 12 Clinical Commissioning Groups - 9 Local Authorities - NHS England Specialist Commissioning • Providers organisations: - Cheshire Wirral Partnerships NHS Foundation Trust - 5 Boroughs Partnership NHS Foundation Trust - Merseycare NHS Trust • Cheshire & Merseyside NHS England Learning Disability Network • Public Health England, Directors of Public Health Cheshire & Merseyside • NHS Health Education North

• C&M Confirm and Challenge Groups supported by Pathways/NWTDT • NHS England North (Cheshire & Merseyside) Nursing Directorate

Representation is from senior leaders from each organisation who have the autonomy and authority to deliver the transformation programme. All partners are committed to delivering new models of care and support for people with a learning disability and/or autism.

This will be achieved with people with learning disabilities, their families and advocates and will be provided through more detailed co-produced plans. C&M TCP board approved Terms of reference are available.

2.4 Describe stakeholder engagement arrangements

The strategy for engagement includes using existing networks within C&M. Where there are gaps, for example in children and young people we aim to strengthen the networks. A full stakeholder communication and engagement plan will now be developed involving service users and advocacy groups in all aspects of transformational planning.

Examples of communication and engagement:

2.4.1 C&M Learning Disability Network There is an established and historic Cheshire & Merseyside Learning Disability Network with CCG, LA, public health, LD Provider and service user representation that has undertaken much work from the Winterbourne View Recommendations over the past 3 years. This network is currently continuing with the delivery of its strategic work plan based on gaps identified via service user feedback and the Learning Disabilities Self-Assessment Framework. Discussions through this network resulted in an agreement that they will become the delivery vehicle for pathway redesign, standards and quality.

2.4.2 Stakeholder day A local stakeholder event was held on 16 Dec 2016 at Daresbury Park Warrington to understand the local ‘ask’ of the National Transforming Care programme across the Cheshire & Merseyside footprint. This was an opportunity to start engagement and develop the Cheshire & Merseyside plan to meet local need.

Over 85 delegates attended the event, with representation from health, local authority, social care, NHS providers, Health watch, advocacy, housing, and experts by experience, family members and carers. Members of the National Transforming Care Programme (NHS England and LGA) outlined the national ‘ask’ and timescales for mobilisation and delivery. On the day we identified gaps in stakeholder attendance and will be planning further engagement and communication strategies.

Co-production is strong in the North West and Local advocates from the North West Co- Production group reminded stakeholders that Co-production must be central to the work we undertake in improving services for individuals with a learning disability including the development of our local transforming care plans. Details from the event have been collated and shared with all of the stakeholders present for wider dissemination and discussion at local level the details of which have supported the development of the C&M TCP.

An annual self-advocacy event coordinated by Pathway’s Associates was delivered in Blackpool on 26th February 2016; giving Self-Advocates and Carers the opportunity to comment on local plans.

Work is also on-going at a local level, examples include Knowsley “Being Involved Advocacy

Group – BIG” who are doing some work around the area.

2.4.3 Best practice event Following the stakeholder day a Best Practice event was held on 11 March 2016. Over 100 delegates attended with representation from health, social care, Third sector, education, voluntary organisations, criminal justice system service users and carer/families. Aim of the event was to showcase and promote high quality care in locally delivered Learning Disability Services that is based on a person centred approach, delivers care outside of institutions and promotes independence and wellbeing. Feedback and evaluation from the Best Practice event has been collated and will now inform the development of local TCP C&M workstreams to assist further with delivery of TCP.

2.4.4 Cheshire & Merseyside Commissioning Delivery systems’ All 3 local commissioning delivery systems have established a local stakeholder group to develop this plan to date. All 3 local systems have recognised that their groups are not yet fully inclusive with limited representation from service users and carers, advocacy, children’s services, housing etc. However this is now being addressed via local stakeholder mapping and engagement.

Ongoing discussions with regard to the plan over the coming weeks will continue. This will include engagement with Learning Disability Partnership Boards and local self-advocacy groups as well as discussions with other professionals.

System representatives also used the opportunity to talk to self-advocates at this year’s North West Self Advocates conference in February 2016 about the plan and will continue to invite input from a range of partners.

2.4.5 Healthwatch Following a meeting with the Northwest Health watch lead officers in August 2015 , we are in the progress of establishing a number of key Healthwatch leads across C&M who are supporting us in involving the harder to reach cohorts to ensure their voice is captured in our local TC plans

2.4.6 C&M LD Network, Workstreams and TCP board The Director/ CEX NWTDT/ Pathways represent the Expert system, along with other team members at meetings of the C&M LD Network and are a core member of the TCP board.

2.4.7 North West Confirm and challenge group The North West Confirm and Challenge Group replaced the Regional Valuing People Programme Board and have representation from health, social care, self-advocate, families, other services and support networks etc.

To facilitate coproduction we have committed to working in partnership with 3 local advocacy teams to develop further the leadership skills of experts by experience within the C&M confirm and challenge groups with the aim of building a sustainable peer advocacy forum. This has now been commissioned and work has commenced on a Cheshire Mersey Footprint.

2.5 Describe how the plan has been co-produced with children, young people and adults with a learning disability and/or autism and families/carers

Co-production is strong as evidenced in the coproduction structured groups outlined in table 4 below. NWTDT/ Pathways have worked closely over the last 18 months to support the development and engagement in the Coproduction, Reducing Health Inequalities and Safe and Responsive Services Work streams lead by the C&M LD network. The role of the

12 experts by experience at these meetings is to ensure the plans developed are based on the feedback and information from people with learning disabilities, their families, and friends and allies so that the plan is truly coproduced in a meaningful way.

A full stakeholder communication and engagement plan will now be developed involving service users and advocacy groups in all aspects of transformational planning. To achieve this wider engagement and co-production there will be an accessible easy read C&M plan developed by our 3 advocacy teams.

Arrangements for co-production include:

2.5.1 NW Confirm and Challenge Group. Membership is from elected self-advocates and family members, working alongside relevant officers and partners. Information flows from self-advocate/ families and lead forums to assist in identifying the important issues to people in the North West which can sometimes differ from those outlined in nationally policy but require equal attention.

Table 4

Detailed conversations, governance and scrutiny of local plans and activity takes place at the sub groups (Staying Safe, Being Healthy and Living Well) who report to the NW Confirm and Challenge Group.

The NW Confirm and Challenge Group maintain an overview of the general work plan and identify cross cutting issues and required action. The Regional Board provides links to professional bodies and agrees the funding resources in relation to suggested work plans. The Regional Board feedbacks to the self-advocate/ families and lead forums.

Self- Advocates, Families and Lead Officers forums meet quarterly and have elected representatives at the National Forum and National Valuing Families Forum.

The Regional Board has elected, nominated representatives from NW ADASS, CCG’s, NHSE, Self-Advocates, Families, Public Health and DCSS.

2.5.2 C&M Confirm and challenge group The C&M Confirm and Challenge Group established in September 2015 in order to assist build the necessary relationships to support good coproduction of local plans. This

13 arrangement builds on existing co-production work and strong relationships between experts by experience, commissioners, Healthwatch, LDPBs and the North West Training and Development Team/Pathways. This will included developing further networks with wider groups such as children and young people, and people not currently engaged with services.

2.5.3 Learning Disability Partnership Boards All nine local authorities have Learning Disability Partnership/disability Partnership Boards accountable to their Health and Wellbeing Boards. All three commissioning systems are actively involved in their local LDPBs. As an example of best practice Cheshire East Learning Disabilities Partnership Board is working with ‘Think Local Act Personal’.

2.5.4 Voices Pathways Associates and the North West Training & Development Team have reported that C&M have, without really noticing, coproduced their plans. They comment it is something that has been done naturally and are now planning to find ways to support the experts by experience who have been involved to date having opportunities to share and develop the plans coproduced to date with the wider C&M community. Service users have reported that they have felt listened to and supported in the local delivery systems to coproduce the development of the local plans.

2.5.5 NW Regional Forum Conference The NW Regional Forum hosts an annual Conference for people with a learning disability from across the NW. The conference runs in February, in Blackpool. The agenda is developed by the Regional Forum and draws national, regional and local speakers. Issues in relation to Transforming Care have been high on the agenda particularly since the conference in 2012, post Panorama. A link to the agenda/ presentations from conference in 2015 can be found at http://blog.pathwaysassociates.co.uk/wp- content/uploads/2015/04/agenda-conf-15-links4.pdf

The agenda for Conference in February 2016 has been developed by the Regional Forum and is entitled; ‘Coproduction – Transforming (our own) Care’. As of 22 January 2016, 62 of the 168 delegates are coming from the C&M region funded through a variety of sources including some people funding themselves or through doing sponsored events in the Summer of 2015 to raise the funding to attend.

NHS England C&M has made a sponsorship contribution to the Regional Forum Conference which has meant that delegate fees were reduced to £145 per person. Members of the C&M LD Network will be joining the final day of conference to listen to what people have to say and to spend time with delegates from C&M to further confirm, challenge and coproduce Delivery Plans for the Transforming Care Assurance Board. NHSE C&M have also co- funded a ‘leadership award’ to be presented at conference in 2016.

2.5.6 Expert Hub: In November 2015 C&M Commissioners collectively with NHS England North (C&M) and NHS England Specialised Commissioning, commissioned NWTDT/ Pathways to provide the independent experts by experience and Clinical Advisers to support the CTR’s. From November 2014 to January 2016 NWTDT/ Pathways supported over 360 CTR reviews.

Experts by Experience were present at all C&M CTRs. CTR templates were completed collectively following each review together with feedback on their experience and CTR process. This has fed into the plans developed across C&M to actively include the voices of people who were involved in the review including the individuals and their families.

Together with NHS England C&M nursing team, Pathways have also been involved in the delivery of education and training to provider organisations, enabling them to develop skills

14 and competency as clinical reviewers in the CTR process.

2.5.7 Showcasing Coproduction Experts by experience have been involved in the delivery of workshops to show case the work they have been undertaking with C&M in respect of co-production and patient experience at the regional RCN conference in November 2015. In December 2015 experts by experience also supported a shared event in C&M. Presentations available if required.

From the coproduction work undertaken by Pathways Associates and the North West Training & Development Team the following are areas that our services users and carers have described as being the areas that they wish us to concentrate on with them:

“A Long Term Relationship NOT a One Night Stand”

• It’s an opportunity to make a real difference • Interested in how people with learning disabilities, families, friends and allies can drive this agenda • Commitment to working to achieve this together • Ensuring that the voice of people with learning disabilities and their family carers and friends are at the centre of all we do • Want to see all the things that they have identified as being important in our plans! • Transforming care must be about social care too • You should only buy services that you would be delighted for members of your family to use • If people are having a crisis they should be able to stay closer to their community not have to go far away – out of sight out of mind! • Some people should never be ‘closed’ to community learning disability teams. Some people will always need help and support in their lives. You must be ready. • This is about our lives, you must keep working with us • Keep doing what you’re doing you’ll keep getting what you’re getting and it’s not good enough • Commissioners should not be taken by surprise in their own communities – know the people in your area • This is about death by indifference and health and inequalities for us all too • Transforming care is not just about the small number of people who live away from home. It’s about all of us, everywhere • Staying Health, Living Well, Being Safe – aren’t they what we all want? We should all be angry that there are such human rights and equality issues in 2015 that affect people with learning disabilities and their families.

We continue to engage and coproduce our work through the following mechanisms: • Experts by experience – involved in over 360 Care and Treatment Reviews • Learning Disability Self-Assessment Framework and peer review panel at the NW Regional Forum; - Laughing Boy workshops at the Regional Forum conference - Development of LDSAF plans - Co Production of TC plans • Green paper consultation • Transforming Care Partnership • C&M Confirm and challenge groups

2.5.8 Cheshire and Merseyside Commissioning Delivery system meetings To facilitate coproduction we have committed to working in partnership with 3 local advocacy

15 teams to develop further the leadership skills of experts by experience within the C&M confirm and challenge groups with the aim of building a sustainable peer advocacy forum.

2.5.9 Gaps in Co-production An identified area that requires further work is in undertaking meaningful engagement with children and young people. This will be addressed in Year 1

It is recognised by all stakeholders that further work is required over the next 12 months to engage with children’s and young person’s services, to ensure the plans are fit for purpose and reflect the needs of all individuals across the entire life cycle.

We are currently in discussions with organisational Communication leads and CCG/LA children’s Commissioners, patient experience leads and family forum leads to develop a plan of action to address this. We will also be expanding our contacts with people with Autism and their families. As such a mapping exercise has been undertaken and completed by our local Co production group, identifying our missing cohorts to be contacted.

Please go to the ‘LD Patient Projections’ tab of the Transforming Care Activity and Finance Template (document 5 in the delivery pack) and select the CCG areas covered by your Transforming Care Partnership Clinical Commissioning Groups: NHS Liverpool NHS South Sefton NHS Southport & Formby NHS Knowsley NHS St Helens NHS Halton NHS Warrington NHS East Cheshire NHS South Cheshire NHS Vale Royal NHS West Cheshire NHS Wirral NHS North West Specialist Commissioning Hub

3. Understanding the status quo 3.1 Baseline assessment of needs and services

Provide detail of the population / demographics In the development of the C&M plans we have been cognisant of including the 5 needs groupings identified in the national service model:

 Children, young people or adults with a learning disability and/or autism who have a mental health condition such as severe anxiety, depression, or a psychotic illness, and those with personality disorders, which may result in them displaying behaviour that challenges.  Children, young people or adults with an (often severe) learning disability and/or autism who display self-injurious or aggressive behaviour, not related to severe mental ill health, some of whom will have a specific neuro-developmental syndrome and where there may be an increased likelihood of developing behaviour that challenges.

 Children, young people or adults with a learning disability and/or autism who display risky behaviours which may put themselves or others at risk and which could lead to contact with the criminal justice system (this could include things like fire-setting, abusive or aggressive or sexually inappropriate behaviour).  Children, young people or adults with a learning disability and/or autism, often with lower level support needs and who may not traditionally be known to health and social care services, from disadvantaged backgrounds (e.g. social disadvantage, substance abuse, troubled family backgrounds) who display behaviour that challenges, including behaviours which may lead to contact with the criminal justice system.  Adults with a learning disability and/or autism who have a mental health condition or display behaviour that challenges who have been in hospital settings for a very long period of time, having not been discharged when NHS campuses or long-stay hospitals were closed. 3.1 NHS England C&M commissioned Liverpool John Moore’s University and Public Health England to undertake a Joint Strategic Needs Assessment of Learning Disabilities and/or Autism across C&M region. (Appendix 1)

This health needs assessment reviews adults and children across Halton, Knowsley, Liverpool, Sefton, St Helens, Warrington, Wirral, Cheshire East, Cheshire West and Chester Local Authorities. It tries to determine the health and wellbeing needs of people with learning disabilities and/or autism and/or behaviours that challenge living in C&M. The findings have been used to develop a set of recommendations for local commissioners.

For this needs assessment, estimates of the expected number of people with learning disabilities have been taken from the Learning Disability Observatory ‘Improving Health and Lives’ website (IHAL) and the PANSI website (Projecting Adult Needs and Service Information system).

Data on those known to services, where available, has been taken from the NHS Information Centre (numbers reported by social services), GP QOF data and directly from each local authority, Clinical Commissioning Group and NHS England. Data on service use and provision has been accessed directly from the three providers across C&M (Cheshire and Wirral Partnership, Mersey Care and 5 Boroughs partnership). This breadth of data has ensured we have incorporated any known information on heard to reach groups, disadvantaged groups and vulnerable groups for inclusivity. For the purposes of this needs assessment, the definition of learning disability is used in the white paper ‘Valuing People Now: A New Strategy for Learning Disability for the 21st Century’ (DH, 2001).

PANSI have used Emerson and Hatton’s (2004) paper to calculate estimate true prevalence of learning disability amongst adults for each local authority. Figure 1compares these estimates for C&M with the number of adults known to each local authority taken from IHAL. Estimates relate to total learning disabilities (including mild, moderate and severe).

3.2 Estimated prevalence The total numbers for C&M are 35,896 (estimated true prevalence) and 7,775 (number probably known to services) aged 18-64 years.

Table 5:own prevalence and true prevalence estimates (numbers with learning disability age 18-64)

700 St. Helens 2,576 805 Sefton 3,861 1425 Liverpool 7,698 680 Knowsley 2,180 465 Halton 1,870 1110 Wirral 4,534 525 Warrington 3,062 1060 Cheshire West and… 4,804 1005 Cheshire East 5,311

0 2,000 4,000 6,000 8,000 10,000

Number probably known to services Likely True number Table 5 Source: PANSI, 2015

The estimates do not take into account local variations, so there will be an over-estimate in communities with a low South Asian community, and an under-estimate in communities with a high South Asian community (Emerson and Hatton, 2004). In C&M, there are relatively low proportions of people of South Asian origin.

This data has further been explored across C&M by 10 year age bands (JSNA pg.28). In Liverpool, the proportion of people aged 25 and under estimated to have learning disabilities is relatively high (1,780). This reflects the high proportion in this age group amongst the general population in Liverpool (14%).

Analysing the data it is evident that people with learning disabilities and autism are a very diverse population, with differing needs and are one of the most vulnerable groups in society, experiencing health inequalities, social exclusion and stigmatisation.

The data highlights to us that amongst those with more severe learning disabilities, there have been considerable life changes for many, with the closure of learning disability hospitals (IHAL, 2012). Following the enquiry and reports after the closure of Winterbourne View Hospital (DH, 2012) and the development of the government’s ‘Valuing People Now’ strategy (DH 2009), there are now clear guidelines in place covering all aspects of the health needs of people with learning disabilities.

Under the Disability and Equality Act (2010), ‘reasonable adjustments’ are required in all practices and procedures to ensure that discrimination against people with learning disabilities does not occur. The data would show you that this continues to require further investigation and will be part of our developments.

Due to the availability of data, the health and social profile sections of this report have focussed more on learning disability than autism. This will be addressed further in the TCPB

Plan.

We still have questions about how many people have learning disabilities and autism across Cheshire and Merseyside. In particular into understanding our cohorts. It is important to consider the hidden population with learning disability – those not using services with potentially unmet need and low level needs. This is because although about 4.6 people per 1,000 in the population are known to have a learning disability; research suggests there may actually be around 20 people in every 1,000 with a learning disability.

There is no consistently collected data on the number of children with learning disabilities. However we do know how many children locally have been identified as having a learning difficulty. It has been estimated that just over three and a half children in every 1,000 has a severe learning difficulty. Those classified as having a severe learning difficulty may well have a learning disability but we cannot say this for certain and this needs to be considered with regard to the children with severe learning disabilities and challenging behaviour.

More positively the number of adults with learning disabilities known to GPs is broadly similar to the numbers local authorities have on their registers. However, there is a lot of variation in GP figures across practices and self-assessment framework (SAF) data does not always give an indication of the total population. There are far fewer people known to these services than we estimate live in our local communities. This means significant numbers are not receiving any help and therefore could be living independent active lives.

In Cheshire and Merseyside, there are an estimated 35,896 people with a learning disability aged 18 and over, but there are only 7,775 who are known to services (2014/15). There is no data available on the numbers actually known to have profound and multiple learning disabilities (PMLD).

We estimate there are about 2,267 children and 14,582 adults in Cheshire and Merseyside with autism. We do not know how many of these have Asperger’s syndrome, although data from two specialist NHS providers (Mersey Care and Cheshire and Wirral Partnership) reported just under 580 Cheshire and Merseyside residents with a diagnosis of Asperger’s on their caseloads in 2015

It is acknowledged and requires further investigation to how many of these people have low level needs and/or are involved with the criminal justice system.

3.3 Health of people with learning disabilities and autism People with learning disabilities face a number of challenges in using health services. These include understanding literature they have been given, keeping appointments and following treatment regimes

People with learning disabilities tend to be less physically active and a higher proportion of them are obese compared to the general population. Local BMI information is limited which makes comparison to the local population difficult. However, high proportions of adults with learning disabilities do seem to be obese with the proportion in each local authority ranging from 34% in Cheshire East to 53.7% in Knowsley; this compared to an England average of 24%.

Information on other co-morbidities is not routinely collected and reported with few areas able to provide details on additional diagnoses amongst people with learning disabilities. However rates of some conditions appear to be high including;  Epilepsy – rates are high locally and nationally research shows epilepsy is at least 20 times higher amongst those with learning disabilities than for the general population.

 The other most common additional health conditions were asthma (four out of seven LAs which provided data) and dysphagia (difficulty swallowing; three out of seven which provided data).  Coronary heart disease was the most common co-morbidity in one local authority which report 7.7% of people with learning disabilities in the area having CHD.

Local data on mortality of people with learning disabilities was very limited with the only data available coming from the LDSAF. However, this only included number of deaths in the previous 12 months and any values fewer than 5 were supressed. Therefore total number of deaths in each LA is not available. No causes of death or age at death were available.

As well as lifestyles, another major reason for poorer health could be worse access to health promotion and early treatment. The health checks that are available either help to prevent people from developing illnesses or treat them early to make it easier and more likely to recover. Cheshire and Merseyside as a region is performing substantially better than the

England average on uptake and practice participation of health checks.

Screening data were available from most areas and shows a similar pattern to national research including:  High rates of people with learning disability refuse or do not attend cervical cancer screening, compared to the population of all eligible women.  Screening uptake for breast cancer was lower in women with learning disabilities compared to all eligible women; though higher than cervical cancer screening uptake.  Bowel cancer screening varied between local authorities and in some areas was higher amongst people with learning disabilities compared to the general eligible population  Information on uptake of contraception and sex and relationships education (SRE) for people with learning disabilities is limited.

3.3 Social issues for people with learning disabilities and autism People with learning disabilities do not just face challenges with healthcare. Many live in poverty and are unable to secure employment. National research suggests only 15% of people with autism are in full-time employment and only 7% of people with a learning disability are in either part-time or full-time employment.

Locally, all areas apart from Cheshire East and St Helens have below the national average levels of employment for people with learning disabilities. The wide variation in employment locally suggests there may be different definitions of work

National research has shown many local authorities believe the type of housing people with learning disability and autism are in does not meet their needs. Although the levels in ‘settled accommodation’, across Cheshire and Merseyside are generally high, this does not tell us about the quality and suitability of their accommodation.

National research also shows that people with learning disabilities and autism are at increased risk of becoming victims of violence and abuse. Local data shows the number of people with learning disabilities referred to social services safeguarding teams is higher than the regional and national average in seven out of nine local authorities.

Many people with learning disabilities and autism have little or no contact with friends. One research study found that 31% of adults with a learning disability having no contact with friends, compared to 3% of adults without a learning disability.

Six out of 10 women with learning disabilities who become a parent have their children taken in to care. Data available on parental status is limited but the available data suggests that numbers of parents are small in each local authority, roughly 10-30 in each area. However, they are likely to have complex and on-going support needs.

3.4 Service Use and Provision There are three NHS providers; Mersey Care, Cheshire and Wirral Partnership (CWP) and 5 Boroughs Partnership, providing both communities based and inpatient specialist care for people with learning disabilities.

Two of three providers (Mersey Care and Cheshire and Wirral Partnership) supplied data for this needs assessment. Each provider had between 1,500 and 2,000 individuals with learning disabilities on their caseload in 2015. The client profile reflected the demographics of those known to Local Authorities and CCGs with the majority being male, white and aged between 21 and 60 years old. The largest proportion of referrals was made by GPs; prominently for people with learning disabilities and/or challenging behaviour and/or mental health issues.

The number of mean learning disability inpatient days per patient per year at Mersey Care and CWP were 12.5 and 18 days respectively, with Mersey Care seeing a rise in the number of mean patient days and CWP seeing a decline. There were approximately 30,000 contacts per provider in 2014/15 of which two thirds were face to face and just less than one in ten were unsuccessful; unsuccessful contacts include DNAs, appointments that were cancelled by the patient or provider and instances where the patient declined. This data is extremely important as it highlights the need of people who are at most risk of admission/not engaged with services and vulnerable groups as identified in our cohorts.

3.5 Projections (diagrammatical data to support our local analysis)

Projections of future numbers of people with learning disabilities are presented in the PANSI database. Amongst those aged 18-64, the numbers with a learning disability are predicted to decrease slightly across all local authorities with the exception of Warrington where a small increase is predicted. Although the numbers in those aged 65 are considerably smaller (Table 7) they are predicted to increase steadily for each local authority between 2014 and 2030.

Table 6: Projections to 2030 of numbers of people aged 18-64 predicted to have a learning disability

9,000 8,000 7,000 6,000 5,000 4,000 3,000 2,000 1,000 0 Cheshire Cheshire Warringto West and Halton Knowsley Liverpool Sefton St Helens Wirral East n Chester 2014 5,311 4,804 1,870 2,180 7,698 3,861 2,576 3,062 4,534 2015 5,303 4,786 1,865 2,175 7,690 3,850 2,577 3,075 4,526 2020 5,261 4,698 1,818 2,122 7,597 3,762 2,561 3,128 4,436 2025 5,200 4,601 1,778 2,041 7,484 3,639 2,536 3,155 4,339 2030 5,090 4,483 1,742 1,974 7,475 3,529 2,510 3,147 4,245

Source: PANSI-8

Table 7: Projections to 2030 of people aged 65 years and over predicted to have a learning disability

2,500

2,000

1,500

1,000

500

0 Cheshire Cheshire Warringt West and Halton Knowsley Liverpool Sefton St Helens Wirral East on Chester 2014 1,662 1,400 438 505 1,427 1,264 723 746 1,367 2015 1,705 1,432 448 510 1,443 1,281 740 767 1,388 2020 1,896 1,585 516 562 1,559 1,387 810 851 1,507 2025 2,081 1,731 575 632 1,712 1,513 875 943 1,633 2030 2,336 1,927 641 714 1,897 1,671 963 1,075 1,797

Source: POPPI-8

3.6 Moderate and Severe Learning Disability PANSI data estimates are also available for two sub-categories of learning disability: ‘moderate and severe’ and ‘severe’ learning disability. These are the groups of people most likely to be in receipt of services, and numbers should therefore correspond to the ‘known’ or

‘administrative’ prevalence of learning disability.

JSNA (2016 p.41) shows numbers with moderate or severe learning disability for each local authority in C&M. Numbers are slightly different to the known prevalence data. There were estimated to be 5,159 people with moderate and severe learning disability in C&M in 2013. The majority of this number (7775, 93%) were known to the local authority.

In Warrington there were far fewer people known to services than would be expected from the estimated numbers (75%). Known numbers are also less than expected in an additional four local authorities (Liverpool, Sefton, Cheshire East and Cheshire West) whilst the remaining five local authorities had more people known to services than were estimated (JSNA 2016 p.41)

Table 8 shows future predicted numbers of those with severe learning disabilities. Between 2014 and 2030, numbers are expected to fall or remain constant in each local authority, with the exception of Warrington, where numbers are likely to rise from 184 in 2014 to 191 in 2030. This will be key to informing the service provision required for this population group and will be considered across the unit of planning.

Table 8: Numbers predicted to have a severe learning disability aged 18-64 years Local Authority 2014 2015 2020 2025 2030 Halton 112 112 109 107 106 Knowsley 131 130 127 123 121 Liverpool 477 476 469 465 469 Sefton 229 229 223 217 214 St. Helens 155 154 152 152 152 Wirral 270 270 263 259 257 Liverpool city region 1374 1371 1343 1323 1319 Cheshire East 316 315 310 308 306 Cheshire West and Chester 288 286 280 275 272 Warrington 184 184 186 189 191 Cheshire 788 785 776 772 769 C&M 2162 2156 2119 2095 2088 Source: PANSI-8

3.7 Profound and Multiple Learning Disabilities (PMLD) There is local data available on known numbers of children with PMLD.

3.7.1 Children In the absence of any other data on disabilities, the data on learning difficulties from Improving Health and Lives: The Learning Disabilities Observatory (IHAL) is a proxy indicator of the prevalence of learning disabilities amongst children.

IHAL currently reports on children with learning difficulties in terms of ‘school action plus’ or ‘Statement of Special Educational Needs’. ‘School action plus’ requires teachers to monitor the different or additional needs of the pupil, and put into place any short term targets and observe what they achieve. ‘School action plus’ is where school action has not helped the pupil to make adequate progress in their education. School action plus seeks advice from the Local Education Authority's support services, from health and social work professionals, giving recommendations on how to work more effectively with the child in class.

A statement of special educational needs will be used if the child’s needs are not met by the school action plus (IHAL, online). The Learning Disabilities Observatory (IHAL) uses the Department of Education categories for classifying the different levels of learning difficulties. However, it should be noted that since the 2014 Children and Families Act set out reforms, ‘school action plus’ is now known as SEN support and an Education Health and Care Plan (EHCP) has replaced the Statement of Special Educational Needs.

The SEN system now extends from birth to 25 years; giving children, young people and their parents’ greater control and choice in decisions and ensuring that needs are properly met. Education Health and Care Plans (EHCP) are integrated support plans for children and young people with complex special needs and disabilities. The Education Health and Care Plan is prepared in partnership with the child or young person, parents, carers and relevant professionals working across education, health and social care specialist services.

We have explored some school census data on children with profound and multiple difficulties, but this is likely to be different to the number with disabilities (see discussion in Section 1.2 and start of Section 2 JSNA 2016). Table 9 shows the numbers of children aged between 7 to 15 expected to have profound and multiple learning difficulties in C&M. This is modelled data, calculated by IHAL, based partly on Spring term school census data. As the educational needs of these children are unlikely to be met in mainstream schools, the variation in numbers is possibly due to the existence of special schools in some areas – although IHAL may have taken this into account when they calculated their estimates. Liverpool was the local authority with the highest rate of children with PMLD per 1,000 population (1.54) and the largest number of children (107).

Table 9: Number of children aged 7-15 years expected to have profound and multiple learning difficulties, 2013/14

Local Authority Number of pupils Number with profound and Rate per 1,000 multiple learning difficulties Halton * * Knowsley * * Liverpool 69316 107 1.54 St. Helens 26385 30 1.14 Sefton * * Wirral 50641 63 1.24 Warrington 31540 26 .82 Cheshire East 53708 63 1.17 Cheshire West and 51070 55 1.08 Chester Source: IHAL Where rows are blank values have been suppressed by PHE for disclosure control due to a small count

Data from the annual school census, made available by Wirral for 2015, shows that there are less children with profound and multiple learning difficulties than predicted in the IHAL estimates (Table 10). The IHAL data was based partly on the school census (see previous paragraph). The number reported by Warrington was slightly lower than the number predicted in table 12.

Table 10 School Census data Pupils with PMLD with Statements and School Action Plus, 2015

Local Authority Number of children Wirral Primary 53 Secondary 5 Total 58 Warrington Total 24 Source: Local Authorities

Local authorities are not required to maintain registers of children with learning disabilities. As a proxy, some local authorities have looked at data on children with statements of educational need (SEN) and learning difficulties. However, this does not reflect the spectrum of disability and is only a weak proxy measure for severity (St. Helens JSNA, 2012). It is also likely that there are different definitions of each level of learning difficulty used by each school.

JSNA (2016 p.35) shows data provided by Local Authorities on the numbers of children who have either Statements of Educational Need or School Action Plus status for learning difficulty. Children with learning difficulties who leave school at 16 will not be captured. Data for Liverpool was not available for 2015 so data from the previous needs assessment (2012 school census) has been included to give an indication of the numbers; however caution must be taken when comparing this data with other local authorities.

There is data available on learning disability amongst children from the Joint Health and Social Care Self-Assessment Framework (SAF); data from local authority level returns is summarised in Table 11 below. Across C&M, 11% of people reported to the SAF were aged between 0 and 17 years. There was some variation in the proportion of 0-17 year olds across Local Authorities with the highest number seen in Sefton where just under one in five (19%) reported in the SAF were aged 17 years and under. The numbers reported by local authorities are considerably lower than the numbers of children predicted by IHAL to have learning difficulties.

Table 11: Number of children (0-17 years) with learning disabilities, 2013

0-13 14-17 Total aged 0-17 Total population % of total years years years with LD reported population aged 0- 17 years Halton 26 29 55 732 8% Knowsley 50 47 97 989 10% Liverpool 144 131 275 2198 13% Sefton 108 110 218 1152 19% St Helens 65 49 114 929 12% Wirral 91 93 184 1731 11% Cheshire East 42 51 93 1100 8% Cheshire 48 46 94 1224 8% West and Chester Warrington 47 35 82 745 11%

Source: Joint Health and Social Care Needs Assessment, IHAL, 2013.

Liverpool City Council (Adults & Children’s Social Care & Education) is working in partnership with Merseycare NHS Trust, CCGs and external service providers such as

Connexions towards producing a single dataset for children and young people. It is intended the single dataset will provide clear and comprehensive information on the needs and trends of children and young people with Special Educational Needs and Disability across services in Liverpool. To facilitate this, a scoping exercise is underway to identify what datasets already exist, who they are being held by and in what system. Preliminary discussions are taking place with stakeholders to determine what information sharing agreements are in place and to identify any gaps. It is expected that the dataset will be in place in 2015/16 subject to data governance issues being met.

3.7.2 53 week placement details

All areas have information available on 52 week residential placements. An example being provided by Wirral CCG who have identified 7 young people who are placed in residential schools out of area and there are 4 young people who are placed out of area in private foster placements.

3.8 Adult Prevalence Known prevalence data for ages 18-64 was obtained from the Adult Social Care Combined Activity Returns (ASCCAR, NHS Information Centre). Table 12 shows the prevalence in each local authority per 10,000 general population (aged 18-64 years). Rates of learning disability are highest in Knowsley, at 70 per 10,000 population and lowest in Warrington, at 40 per 10,000 population.

The numbers of people with learning disabilities known to local authorities in C&M is shown in JSNA (2016 p.38), with a total of 7,775 adults across the whole area (4,530 males and 3,240 females). The data relates to people of working age (18-64) and is broken down by gender.

Table 12 : Prevalence of learning disabilities: People known to the local authorities as having a learning disability per 10,000 population aged 18-64, 2013/14 80

40 75 65 30 60 60 55 50 45 45 45 45 20 40

0 Prevalence Prevalence per 10,000 population

Source: NHS IC NASCIS, ASCCAR L2

Data provided directly from Wirral Borough Council and taken from their Self-Assessment

Framework (SAF) return in 2013/14, indicating that there were 1,470 people aged 18-64 with learning disabilities. This is higher than the 1,110 known to social services reported to the NHS Information Centre (ASCCAR) in 2013/14.

Similarly the number of people provided directly by Liverpool City Council reported 1,559 individuals with learning disabilities known to the local authority in 2015 which again is higher than the number reported (1,425 individuals).

Data provided by Sefton states there are 1,606 adults aged 18-64 which again is substantially higher than the 805 individuals reported to the HSCIC. In Warrington the numbers provided directly from the local authority were also slightly higher than the number reported at 573 compared with 525.

Conversely, data provided by Cheshire West and Chester council and supplied directly from their information system reports that there were 852 adults with learning disabilities known to the local authority which is less than the 1,060 individuals reported to the HSCIC in 2013/14. The data provided by the local authority is based on the ASCOF rules which count only those receiving a service for a learning disability and this may account for some of this difference.

The number provided by St Helens for 2014/15 states that 682 adults aged 16-84 years with learning disabilities are known to the local authority which is slightly lower than number reported to the HSCIC.

3.8.1 Adults Ages 65+ Data for those aged 65 and over with learning disabilities is not available from the Adult Social Care Combined Activity Returns (ASCCAR, NHS Information Centre); however data on the number known to each partnership board is reported to the Joint Health and Social Care Self-Assessment Framework (SAF) and data from the 2013 SAF is included in Table 13 below.

The prevalence of learning disabilities in adults aged 65 years and over was highest in Knowsley (36.9 per 10,000) and lowest in Cheshire East (13.6 per 10,000 population). The overall prevalence of learning disabilities in C&M among older adults was 19.7 per 10,000.

Table 13: Prevalence of learning disabilities in older adults (aged 65 years and over)

Adults with Total population Prevalence per LD aged 65 aged 65 plus 10,000 population plus Halton 52 21013 24.7 Knowsley 90 24365 36.9 Liverpool 205 69305 29.6 Sefton 104 61153 17.0 St Helens 59 34845 16.9 Wirral 128 65998 19.4 Cheshire East 112 80564 13.9 Cheshire West and Chester 112 67564 16.6 Warrington 48 36066 13.3 C&M Total 910 460873 19.7 Source: Joint Health and Social Care SAF, IHAL, 2013 and ONS mid-2014 population estimates.

Data provided directly:

 Liverpool local authority reports 205 individuals with learning disabilities aged over 65 years of which 72% are aged between 65 and 74 years, 23% are aged between 75 and 84 years and 5% are aged 85 years and over.  Sefton reports 249 adults aged 65 years and older known to the local authority which is considerably higher than the number reported to the SAF.  St Helens reports 35 individuals aged 65-84 which is lower than the 59 reported to the SAF.  Warrington data reports 37 individuals known to the local authority aged 65 years and over of which 95% were aged between 65 and 74 years. This is again lower than the number reported in the SAF  Wirral on adults with learning disabilities aged 65 years and over for 2013/14 is slightly higher (148 individuals) than the number reported in the 2013 SAF (128 individuals and this number has increased to 163 in 2014/15.

3.8.2 Known prevalence aged 18+ (GP data): learning disability C&M JSNA (2016) shows that across C&M in 2014-15, levels of learning disability recorded in general practice were equal or higher than the national average of 0.44% in eight out of 12 CCGs. The four CCGs with prevalence below 0.44% were all in Cheshire namely: East Cheshire, South Cheshire, West Cheshire and Warrington. Levels were highest in Knowsley and Halton, at 0.63% of the total practice population aged 18 plus in both CCGs. As would be expected, levels and patterns are similar to local authority learning disability register data, where percentages were highest in Knowsley (0.75 %) and lowest in Warrington (0.40%).

Table 14 demonstrates the people on the register and practice level variation in prevalence. Variations between practices are most notable in Southport & Formby, where the percentage of the practice population aged 18 plus on the learning disability register is as high as 2.11% in one practice. In the other 18 practices, the proportion on the register varies from 0.15% to 1.05%. In Liverpool, the prevalence in one practice was 1.52%, with the rest ranging from 0.06% to 1.40%.

Table 14: Number and percentage on the GP Learning Disability Register, and range of learning disability (LD) prevalence across practices, 2014-15, ages 18+ CCG Name Estimated Learning Prevalence Lowest Highest List Size 18+ Disability Rate practice practice Register (per cent) prevalence prevalence NHS EASTERN CHESHIRE 165,944 635 0.31 0.06 0.66 CCG NHS SOUTH CHESHIRE CCG 143,009 614 0.34 0.11 0.83 NHS VALE ROYAL CCG 81,631 448 0.44 0.25 0.68 NHS WARRINGTON CCG 168,431 838 0.39 0.11 0.71 NHS WEST CHESHIRE CCG 209,906 939 0.36 0.09 0.88 NHS WIRRAL CCG 265,696 1,909 0.57 0.15 1.37 NHS HALTON CCG 100,147 802 0.63 0.2 0.87 NHS KNOWSLEY CCG 127,066 1,019 0.63 0.29 1.21 NHS SOUTH SEFTON CCG 119,067 654 0.44 0.11 1.01 NHS SOUTHPORT AND 101,119 749 0.61 0.15 2.11 FORMBY CCG NHS ST HELENS CCG 152,668 937 0.49 0.16 0.9 NHS LIVERPOOL CCG 409,607 2,468 0.49 0.06 1.52 Source: NHS IC QOF

Actual numbers on the GP learning disability register are higher than numbers recorded by local authorities. This is partly because GP data counts all those aged 18+, and data readily available from local authorities is for ages 18-64 only.

However, some of the differences appear to be larger than would be expected, for example in Liverpool there are 2,468 people on the GP learning disability registered compared with 1,425 on the local authority register. Similarly Wirral GP register data reports 1,909 adults with learning disabilities compared with 1,110 on the Local Authority register.

These differences could be partly due to the fact that GP registers are capturing more people with learning disabilities, as they will include those not necessarily known to local authority services. They could also be due to the fact that data is not directly comparable; because GP registered populations are different to local authority resident populations.

GP data was obtained for Wirral for 2014/15 which includes ethnic group. There were 23 people on the GP learning disability register from a minority ethnic group. This dataset also included numbers with learning disability by age groups 0-13; 14-18; 19-25; 26-64 and 65+ which is provided (JSNA 2016 p.42). This data is available because Wirral has set up a service level agreement (SLA) with GPs for improved recording of learning disability. It has had the effect of increasing figures on GP databases and has the potential to capture those not currently receiving services from the local authority. This is being considered for inclusion across the TCP footprint.

3.9 AUTISTIC SPECTRUM DISORDER (ASD)

3.9.1 Learning disability and autism Autistic spectrum disorders are shown by between 20%-33% of people with learning disabilities known to the local authorities (Emerson et al, 2012). There is even more variation in estimates of the proportion of people with ASD who have a learning disability. Emerson and Baines (2010) suggested that the estimate amongst children was somewhere between 40% and 67%.

3.9.2 ASD in children Expected numbers of children with ASD have been estimated by applying the prevalence rate of 1% reported by the National Autistic Society (2013) to local populations. JSNA (2016 p.44) shows the numbers of children aged under 18 estimated to have autism across C&M, projected to 2025. In 2015, there were 5,488 children predicted to have autism. Numbers are set to rise slightly in each local authority across the region. By 2025, projections indicate that there will be 5,663 children with ASD across C&M.

Based on 1% prevalence estimate applied to 2012 population projections (ONS, 2014) Known prevalence: Data on the number of school pupils with statements or school action plus for ASD is recorded in the school census which is published in the special educational needs dataset by the department of education (Table 15).

Table 15: Pupils with ASD as primary special educational need (SEN), 2015

Autistic Spectrum Disorder Number % of all children with a statement of need Cheshire East 17 6.0 Cheshire West and Chester 241 29.1 Halton 129 44.6 Knowsley 127 31.1 Liverpool 322 25.3 Sefton 233 41.4 St. Helens 156 39.4 Warrington 89 30.2 Wirral 210 20.9 School census published in Special Educational Needs in England, 2015, DofE

Data on pupils with ASD was provided directly by just two local authorities. The Warrington 2015 census found that there were 315 pupils with ASD with statements. In Wirral there were 850 school children known to have ASD of which 132 had School Action Plus, 494 had a statement, 10 had an Education, Health and Care Plan. Overall 1.4% of school pupils were known to have ASD and 16% of children with statements or school action plus were known to have ASD. The data from both local authorities was considerably higher than the number published by the Department of Education but this may in part be because this data only publishes information based on primary SEN.

Table 16 gives estimates of numbers aged 7-15 expected to have different levels of learning difficulties in each local authority in C&M, excluding those with a mild learning difficulty.

Table 16: Number of children aged 7-15 expected to have learning difficulties, 2010 Profound and Moderate Autism Severe learning multiple LA All pupils learning spectrum difficulties learning difficulties disorder difficulties Halton 13,553 45 16 656 132 Knowsley 16,917 64 23 886 140 Liverpool 42,951 160 57 2224 384 Sefton 26,641 88 31 920 261 St Helens 18,049 66 73 753 177 Wirral 33,016 104 38 1352 329 Liverpool city 151,127 527 238 6,791 1,423 region Cheshire East 33405 100.8 33.8 836.7 322.2 Cheshire West and 31,453 98 34 977 309 Chester Warrington 21,145 62 22 604 212 Cheshire and 86,003 260 89 2,417 844 Warrington Total C&M 237,130 787 327 9,208 2,267

3.9.3 ASD in adults: An assessment of the issues arising from completion of the local authority autism self- assessment framework in 2011 was undertaken (Roberts et al, 2012a). Issues included the identification of a major gap in local information about people with autism, such as the number of people with autism, and what services they use.

In the absence of known numbers, estimates can be calculated using the national morbidity survey on autism in adults. This survey found the prevalence of ASD to be 1.0% of the adult population (HSCIC, 2009). The rate among men (1.8%) was higher than that among women (0.2%), which fits with the profile found in childhood population studies, according to the HSCIC.

In the PANSI database, these prevalence rates have been applied to ONS population estimates of the 18 to 64 male and female population to give expected numbers predicted to have autistic spectrum disorder.

Table 17 shows the expected prevalence of ASD amongst adults aged 18-64 across C&M, with 1,497 females and 13,085 males (14,582 total). There are around nine times more males than females expected to have autism. This is much higher than in learning disability as a whole, where expected prevalence rates amongst males are only slightly higher than amongst females.

Table 17: Males and Females predicted to have an Autism Spectrum Disorder (ASD)

3,500 311 3,000

2,500 221 2,000 202 193 163 1,500 2,819 126 107 1,000 1,958 95 1,742 79 1,638 1,399 1,141 500 949 679 760

0 Cheshire Cheshire Halton Knowsley Liverpool Sefton St Helens Warrington Wirral East West and Chester

Male Female

Source PANSI, 2015

Data obtained directly from some local authorities was not always consistent. Where data was available, some data systems do not distinguish between learning disability and autism. Also, it was not common practice to specify separate numbers with Asperger’s syndrome.

In Knowsley in 2013, there were reported to be 858 adults known to services with autism including 222 aged 65+. This is substantially higher than the numbers provided in the

32 previous needs assessment suggesting that these numbers may be based on projections rather than the numbers known to the LA.

Data obtained from Cheshire West and Chester reported that there were 65 people with autism. This is considerably lower than the number projected in figure 8 but the Local Authority acknowledged that this number is likely to be an underestimation due to data categorisation from health services.

Self-Assessment Framework data from South Sefton for 2014 indicated that there were 205 adults aged 18+ with learning disabilities who also had autism and were known to general practice.

Amongst children with autism, it is expected that at least half will have a learning disability that would lead to them being identified by the authorities. Numbers of adults with autism who are known to services (where available) are far smaller than the estimated prevalence of autism. This would suggest that there are a large number of adults with autism unknown to the local authorities who may be in need of additional support. This will be a focus of future information requirements to ensure we are concentrated on unmet need.

3.10 Autism and learning disability The Joint Adult and Social Care Self-Assessment Framework (SAF) show the numbers of individuals having both learning disability and autism. Amongst adults with learning disabilities, between 5% and 16% also had a diagnosis of autism.

3.10.1 Asperger’s Syndrome Asperger syndrome is a form of autism. People with Asperger syndrome are often of average or above average intelligence. They have fewer problems with speech but may still have difficulties with understanding and processing language. (Source: The National Autistic Society, www.autism.org.uk).

There is no readily available data on numbers of people with Asperger’s. GP data is coded for Asperger’s but this data was not readily available. Data from two providers reported around 580 people with Asperger’s on their caseload for 2015.

In C&M there are two specialist Asperger’s teams based in Liverpool and Sefton. Many other local authorities in the country do not have such support available. However, these teams do not deal with people who have Asperger’s with a learning disability; these individuals would be the responsibility of the learning disability team so these numbers are likely to underreport both the number of individuals with Asperger’s known to services and the number in the overall population.

In 2015, there were a total of 302 people on the Liverpool and Sefton Asperger’s Team caseload of which 62% were resident in Liverpool CCG, 21% were resident in Southport and Formby CCG and 16% in South Sefton CCG. There were 123 referrals to the two specialist Asperger’s Teams in 2015.

Cheshire and Wirral Partnership also provided data on the number of individuals with a primary or secondary diagnosis of Asperger’s. There were 288 people with Asperger’s who had contact with the service in 2015 of which 19 also had a diagnosis of learning disability.

The majority of adults with learning disability were resident in Wirral CCG (43%).

JSNA (2016 p. 48) shows the number of people with Asperger’s accessing Mersey Care and Cheshire and Wirral Partnership (CWP) in 2015. The total number for each service is lower than the totals given above as both services have a small proportion of individuals accessing from outside of C&M. It is also possible that the totals given could represent some double counting if any individuals have moved across the two services during the year. Data from 5 Borough Partnership was not available at the time of publication and so the numbers for Knowsley, Halton, St Helens and Warrington are likely to be much lower than the numbers actually known to services.

3.11 Mortality and Age at Death A study published in 2009 by Tyrer and McGrother found mortality rates amongst people with moderate to severe learning disabilities to be almost three times higher than in the general population. Mortality was especially high in young adults, women and people with Down’s syndrome, although the life expectancy of those with Down’s syndrome has increased more rapidly recently, compared to those with other types of learning disability (Emerson et al, 2012).

It was not possible for the authors to say how many of these deaths would be unexpected, as they noted that people with learning disabilities often have significant co morbidity, such as physical impairments, congenital heart malformations and mental disorders, which all incur a greater risk of death. However, this would not explain all the difference (Tyrer and McGrother 2009).

Recent data on individuals with learning disabilities who died in C&M was unavailable. The LDSAF returns include information on the number of people with learning disabilities who have died in the last year (2013-14). However as numbers fewer than 5 are supressed the information is very limited (see table 18). No data were available for Warrington or Wirral. Sefton and Liverpool saw the highest number of deaths however without full unsuppressed data it is not possible to compare mortality rates.

An area of good practice highlighted in a mortality audit of learning disability related deaths is currently being undertaken across South Cheshire and Vale Royal CCGs following a number of recent cancer related deaths. The findings of the audit are expected in the second quarter of 2016.

Table 18: number of people with learning disability who died in year to March 2014 by local authority. Cheshire Cheshire Halton Knowsley Liverpool Sefton St Helens East West & Chester Aged 0-13 0 0 0 0 0 0 Aged 14-17 0 0 0 <5 <5 0 Aged 18-34 <5 0 <5 <5 <5 <5 Aged 35-64 <5 5 <5 6 8 8 7 Aged 65 & over 5 <5 <5 <5 11 11 5

To stop identifying patients any numbers fewer than 5 have been supressed and numbers 1- 4 have been replaced. Therefore columns cannot be totalled.

The Learning Disability Observatory (IHAL) examined mortality data for the period 2006 to 2010 and calculated the median age at death of people with learning disabilities (i.e. the midpoint of the ages of all the people who have died). IHAL noted that data may be incomplete because often, doctors do not record learning disabilities on death certificates if they consider it had no relationship to the person’s death.

The JSNA (2016) noted results for four of the local authorities in Merseyside and North Cheshire are shown in Table 30. Values were only recorded where the number of deaths is greater than 10, which may be why data for Halton, St. Helens and Warrington was unavailable.

In Liverpool, the median age at death was the same as the national and North West figure of 55 and in Wirral; it was just under, at 54. In Knowsley and Sefton, people with learning disability lived longer, with a median age at death of 60.5 (although differences to the national figure were not significant).

3.12 Community care

JSNA (2016 p.91) shows the extent to which local authorities are providing community services for people with learning disabilities known to them. Community based services are services commissioned and provided by social services or and NHS Health Partner as part of a care plan following a Community Care Assessment and include home care, day care, meals, direct payments, short term residential care (excluding respite), professional support and equipment and adaptions. Nationally, just over eight in ten (82%) of those aged 18-64 years with learning disability were receiving community services in 2013/14. Across C&M, rates were higher than the national average with the exception of Sefton and St Helens where around three quarters (73% and 76% respectively) received community services.

We are aware of the level of need and referral criteria into LD community services, there are more likely to be referrals for the cohort of people with Challenging Behaviours and /or mental health needs. So this data gives insight into the cohort need within each locality. A percentage of these people will be at risk of a crisis and admission to hospital this information can be cross referenced with the admission data to understand demand for inpatient /intensive response type services.

3.13 People with learning disabilities in the criminal justice system

The Bradley Report (DH Bradley Report, 2009) highlighted the disproportionately high number of people with learning disabilities and mental health problems in the criminal justice system (CJS - a term used to mean the police, courts, prison and probation). It has been estimated that the proportion of people in prison who have learning disabilities or learning difficulties that interfere with their ability to cope with the criminal justice system is around 20-30% (Loucks, 2007, Talbot, 2008).

For those aged under 18, Hindley is where the majority of male young offenders from the Merseyside area are sent to if they are sentenced to custody. There are no YOI institutions in Merseyside. Female offenders are sent elsewhere in the country, and are likely to be held further from home. There is one secure children’s home for offenders in St Helens (Red Bank). There are no secure training centres. For over 18s – there are no female prisons on Merseyside.

The estimated proportion of people in prison who have learning disabilities or learning difficulties that interfere with their ability to cope with the criminal justice system is around 20-30%. Many are unidentified.

Across Merseyside; Prisons – Current healthcare provision has been re-procured in HMP Liverpool and HMP Kennet, the new contract commenced in June 2015 meeting national specifications. A 5 + 2 year contract has been awarded.

Police Custody & Courts – The nationally specified liaison and diversion is being piloted in the Merseyside area, this scheme triages and refers anyone with a ‘vulnerability’, which includes LD, MH, behavioural, social care and SMS.

Gaps; current issues with access to MH beds and facilitation of MH Act assessments, there appears to be some ‘dis-connect’ between community and NHSE commissioned services.

Plans ; Introduction of the Engager programme at HMP Liverpool to work with individuals with lower level MH needs, referral to community services and support until engagement. Also, it is intended to continue to work with Merseyside Police to develop an integrated healthcare provision in police custody including L&D.

Across Cheshire; Prisons - Current healthcare provision has been re-procured in HMP Risley, Thorn Cross and HMP Styal, with the new contract due to commence in April 2016 meeting national specifications. A 5 + 2 year contract has been awarded.

Police Custody & Courts –Liaison and diversion schemes are being developed in the Cheshire area; these schemes will triage and refer anyone with a ‘vulnerability’, which includes LD, MH, behavioural, social care and SMS.

Gaps; current issues with access to MH beds and facilitation of MH Act assessments, there appears to be some ‘dis-connect’ between community and NHSE commissioned services. Also, L&D in Cheshire is not working to national model with reduced hours in custody and court.

Plans; It is intended to continue to work with Cheshire Police to develop an integrated healthcare provision in police custody including L&D. Also, current schemes will incrementally develop until national rollout is approved by HM Treasury and funding is available

There are 3 male prisons on Merseyside – HMP Liverpool, Altcourse, and HMP Kennet. In Cheshire there are two male prisons HMP Thorn Cross and HMP Risley. Female offenders from the C&M area are sent to HMP Styal in Cheshire. The Alderley Unit in Cheshire is a low secure service unit for males with 15 beds for those with mild to moderate learning disabilities who have or are assessed likely to commit an offence.

As with other agencies, young people with learning disabilities are considered to be young people until the age of 25 years. Most youth offending teams will assess young people at 18, and make a decision as to their suitability for transfer and ability to cope with the adult system (Lewis and Scott-Samuel, 2013).

Local data: The Adult Social Care Combined Activity Returns (ASCCAR) from the NHS Information Centre includes information on accommodation type for those people with learning disability who are known to local authorities. This includes:

 numbers in custody (prison/young offenders institution/detention centres), and  numbers in approved premises for offenders released from prison or under probation supervision (e.g., probation hostel)

Across both C&M and the North West as a whole there were no individuals known to have learning disability recorded as being in custody. There were ten individuals known to have a learning disability residing in approved premises in the community in 2013/14 all of whom resided in Wirral. This illustrates the under-reporting of learning disability for people in the criminal justice system and the need for improved screening at the point of first contact.

A health needs assessment for young offenders across the youth justice system on Merseyside (Lewis and Scott-Samuel, 2013) found that at HMYOI Hindley, in a 4 month period (1st August to 30th November 2011), there were 56 referrals to the learning disability service. It is not known what proportions of these referrals were of people from the Merseyside area. At the time of the needs assessment, there were two full-time learning disability nurses employed at Hindley.

There was found to be no direct provision for young offenders with learning disabilities at Red Bank home in St. Helens. There are some good examples, which future data could be sourced. As described below:

Joint working in Sefton The Criminal Justice liaison system is in place between the Courts and Merseycare NHS Trust to enable vulnerable adults including those with ASC (autism spectrum condition) to receive appropriate NHS interventions. Joint planning with health partners is in place. The MARAC process is well established with all criminal justice agencies for vulnerable adults. Sefton Autism Self Assessment, 2012

3.14 EMPLOYMENT Levels of employment amongst people with learning disabilities are generally a lot lower than amongst the general population. In 2012/13, only 7% of working age adults with learning disabilities were in any form of paid or self-employment, part time or full time (9,845 individuals).

Data for C&M local authorities shows that employment levels are highest in Cheshire East (8.2%) and St Helens (6.1%) (Table 19). These levels are above the national average of 6% and well above the average for the North West of 4.2% (2014/15). Employment levels are very low in Warrington, Sefton and Wirral, at fewer than 3% (2014/15).

Table 19: Proportion of working age adults with learning disabilities in any paid employment, 2014/15 9 North West Average (4.2%) England average (6%) 8

4 8.2

3 5.7 5.9 6.1

2 3.6 4 2.7 1 1.9 1.7 0 Cheshire Cheshire Halton Knowsley Liverpool Sefton St Helens Warrington Wirral East West And Chester

Source: NHS Information Centre, Adult Social Care Outcomes Framework for 2014/15 (ASCOF measure 1E). Adults with learning disabilities known to Councils with Adult Social Services Responsibilities (CASSRs) in paid employment at the time of their latest review.

3.14.1 Paid employment of 16 hours or more per week In 2013/14, as few as 0.9% men and 0.4% women with learning disability worked for 30 or more hours per week. In Halton, Knowsley, Sefton, St. Helens and Warrington, there was no-one with a learning disability known to social services recorded as being in paid employment for 30 hours or more per week in 2013/14. In Liverpool there were 80 people, in Cheshire East there were 20, in Wirral there were ten and in Cheshire West there were five. Table 35 shows the numbers of adults with learning disabilities working 16 hours or more in 2013-14 in paid employment (at or above the minimum wage). There were none recorded in Halton. In St Helens, whilst no males or females were recorded the total for the local authority was 5 as values fewer than 5 have been supressed. The local authority with the largest number of individuals working 16 hours or more was Liverpool (90 individuals) and the proportion of people with learning disability in paid work of 16 hours or more per week is three times the national average, at 6% of all those with a learning disability (2% nationally).

3.14.2 Gender Amongst males in Liverpool and Cheshire East, 8% and 7% respectively are working 16 hours or more (considerably higher than the national average of 3%). For females. Cheshire East had the highest proportion working 16 hours or more (6%) with Liverpool (3%), Sefton (2%) and Warrington (2%) also above the national average (1%) (Table 20).

Table 20: Paid employment of 16 hours or more per week amongst male and female adults with

38 learning disabilities Numbers in paid employment 16 hours+ as % of all those with learning disability of working age (18-64) and known to adult social services, 2013-14.

Paid work 16 Male Female hours or more per week number in % in employment number in % in employment employment employment Cheshire East 40 7% 25 6%

Cheshire West 15 3% 5 1% And Chester Halton 0 0% 0 0% Knowsley 5 1% 0 0% Liverpool 70 8% 20 3% Sefton 5 1% 5 2% St Helens 0 0% 0 0% Warrington 5 2% 5 2% Wirral 15 2% 0 0% North West 305 3% 120 1% England 2105 3% 835 1%

*Note: totals of less than 5 would have been recorded as 0, because of the suppression of small numbers. Source: NHS Information Centre, Adult Social Care Combined Activity Returns data (ASC-CAR) for 2013/14. Adults with learning disabilities known to Councils with Adult Social Services Responsibilities (CASSRs) in paid employment at the time of their latest review, receiving at least the minimum wage.

Examples Of Local Delivery: Employment

Norton Priory museum, gardens and visitor centre, Halton Halton Community Services have opened new work based opportunities across the borough which will enable people with disabilities to learn pre-employment skills in order to access the workplace. Resources were diverted from traditional ‘bricks and mortar’ based day care services to create opportunities structured for business and linked to the commercial world. This was made possible through strong links with Norton Priory Museum, a key service partner, which provides work experiences for those with learning disability and autism in various settings, including the Refectory Cafe, Tea Room, Ice-cream making Parlour, Norton Brewing (a real ale brewery), the Bottling Plant and the Craft Shop. The 22 community venues across the borough provide meaningful daytime activity and multiple work experience opportunities for 145 adults with a learning disability or autism. Contact: [email protected]

Achieving People: Sefton ‘Achieving People’ supports people aged 18 – 64 in Sefton who have a learning disability into unpaid work placements and paid employment.

Clients are supported on a one to one basis by a mentor in their chosen opportunity.

Further details: http://www.volunteeringsefton.org.uk/index.php?option=com_content&view=article&id=105&Itemid= 89

Summary; the demographic data is highlighting inconsistency between health and social care data. This is partially due to the LA using 18-64yrs and GP's using 18-75+ for example. We need to consider aligning data collection age bands moving forward. This can be considered as part of the development of our dynamic risk registers.

Understanding health and social need is a good way of understanding choice and control in people’s lives and an indicator of quality of life indicators.

Understanding data with regard to health and wellbeing will support indicators/outcomes of quality of care. We have included data with regard to mortality and physical health issues as these are often common themes which indicate lack of access to mainstream services and or complexity in need which often contribute to challenging behaviours.

The use of Care and Treatment Reviews has given an added understanding to the needs of people in long stay hospitals, and people at risk of admission. Triangulating the data to understand the cohorts and being able to use this to develop and plan services will be part of the priorities moving forward.

Further exploration of the children’s data, with regard to identifying children with learning disabilities and 52 week placements is required and understanding children’s pathways which result in them being at risk of being known to the criminal justice system. This will form part of initial developments of the ‘offender pathway and early intervention for people with challenging behaviour.

3.15 Analysis of inpatient usage by people from Transforming Care Partnership

3.15.1 In patient numbers As of 31 March 2016 current in patient figures are as follows :

Type of bed In Patient figures as at 31 March 2016 NHS England Specialised Commissioned 55 CCG Commissioned 75 Total 130 Data Source AT tracker March 2016

Note: The above figures are based on Assuring Transformation (AT) data returns that collects information from commissioners about individuals with learning disabilities and/or autism, who may have a mental health condition or behaviour that challenges, in in-patient settings. The collection will consider in-patients receiving treatment / care in a facility registered by the Care Quality Commission as a hospital operated by either an NHS or independent sector provider ;which could be either a mental health bed or a bed in an assessment and treatment unit.

In patient activity is provided via a combination of NHS (secure and non-secure) and Independent (non NHS) provider commissioned beds as outlined below:

CCG of origin Total no. Total no. patients in patients in CCG NHS England commissioned Specialised beds services East Cheshire 7 3 West Cheshire 8 3 Halton 4 4 South Cheshire 6 2 Vale Royal 4 0 Warrington 5 3 Wirral 15 10 Knowsley 3 2 South Sefton 2 8 Southport 3 1 St Helens 2 6 Liverpool 22 13 Total 75 55

Data Source AT tracker March 2016

3.15.2 Cheshire and Merseyside CCG Commissioned in patient bed provision C&M CCGs commissioned acute in patient and community learning disability NHS provision is principally provided by the 3 NHS Mental Health Trusts serving the area; Cheshire Wirral Partnership NHS Foundation Trust(CWP, 5 Borough Partnership NHS Foundation Trust (5BP) and ) Merseycare NHS Trust.

There are currently 4 (CCG commissioned) acute NHS assessment and treatment (A&T) units across the Cheshire & Merseyside footprint offering a total of 39 NHS beds as outlined below:

 10 beds: Eastways, Cheshire Wirral Partnership, Chester  12 beds: Greenways, Cheshire Wirral Partnership, Macclesfield  8 beds: Byron Ward, 5 Borough Partnership ,Warrington  9 beds : Star Unit, Merseycare, Liverpool

For CWP, the overall inpatient NHS Assessment and Treatment bed provision is 22 beds, of which 16 are commissioned by local C&M CCGs (although there is no set allocation per CCG); the remainder being available for spot purchase by out of area commissioners.

For 5 BP the overall inpatient NHS Assessment and Treatment bed provision is 8 beds, of which 7 are commissioned by local C&M CCGs (although there is no set allocation per CCG); the remainder being available for spot purchase by out of area commissioners.

Both of the above units are used by out of area commissioners where no Assessment and Treatment facilities are provided e.g. Greater Manchester- Trafford/Wigan.

For Merseycare the overall inpatient NHS Assessment and Treatment bed provision is 9 beds commissioned by local C&M CCGs, although there is no set allocation per CCG although Liverpool CCG currently funds 4 beds and Sefton CCG 5 beds.

This gives a current total of 32 NHS commissioned A&T beds across Cheshire and Merseyside

It is important to note that over the previous 5 years (2010-2015), NHS A&T bed usage across the Cheshire & Merseyside footprint has declined as a result of:

 the closure and decommissioning of an 8 bedded A&T unit, Willis House, Whiston 2011 (5 Borough Partnership),  the closure and decommissioning of the 12 bedded A&T unit, Kent House, Upton 2013 (Cheshire Wirral Partnership)  Reducing occupancy rates in the four remaining units.

This has resulted in a 33% reduction in PCT/CCG commissioned NHS A&T provider beds over the 5 year period (2010-2015)

CCG commissioned Out of Area bed usage C&M CCGs currently utilise the services of 10 independent (non NHS) providers through CCG spot purchasing of inpatient beds.

The current independent providers are: Mental Health Care UK, Alternative Futures, Equilibrium, Huntercombe, Cambian Health Care, Lighthouse Health Care Limited, Priory Hospitals, Manchester Mental Health Trust, St Marys Warrington and Weaverlodge.

As of 31 March 2016 there are 27 C&M patients in Independent (Non NHS) provider out of area (OAT) hospital services, commissioned by Clinical commissioning Groups (CCGs) through spot purchasing as outlined below;

CCG Commissioned OATS In independent hospital Liverpool 8 Sefton/Southport & Formby 0 Knowsley 0

St Helens 1 Halton 0 Warrington 3 Vale Royal 1 South Cheshire 3 West Cheshire 6 East Cheshire 3 Wirral 2 Total 27

Data Source AT tracker March 2016

Of the 27 patients, 23 are detained under the Mental Health Act as outlined below: • 3 are detained under section 37 with section 41 restriction • 4 are detained on section 37, • 1 detained under section 47/49 (all sections reflect a forensic history • 15 are detained under section 3 for treatment.

Only 2 out of the 27 OAT patients are currently in in patient placements within the C&M footprint. The majority of the remaining 25 are cared for in hospitals on the borders of C&M in Staffordshire and North Wales; however the furthest placements away from C&M are in Sheffield and Birmingham. Whilst this cohort may appear to be ‘out of area’, we need to be mindful of boundaries; for some Cheshire patients Staffordshire and Birmingham is closer to their home. Cheshire and Merseyside TCP are currently undertaking a project to review all of their OAT patients with a view to local repatriation and/or discharge where possible

3.15.3 NHS England Secure service in patient bed provision The NHS North of England Specialist Commissioning team currently commissions a range of secure/forensic services.

Low secure Low secure learning disability provision has been provided at 3 in patient units: • 10 bedded all female unit, The Auden Unit, Hollins Park Hospital, provided by 5BP • 15 bed all-male unit; The Alderly Unit, provided by CWP. This provision is supplemented by use of highly specialist services such as Alpha Hospital, Bury, Alpha Care, with a low secure and medium secure deaf unit for patients with a learning disability. • Calderstones Partnership NHS Foundation Trust.

Medium Secure Medium secure learning disability provision is currently provided via Calderstones Partnership NHS Foundation Trust; however at the time of writing this plan, Calderstones are currently undergoing an acquisition by Merseycare NHS Trust

NHS England Specialist Commissioning activity As of 31 March 2016 there are currently 55 individuals from C&M in Specialised Commissioning services. Of this cohort: • 46 patients are currently in North West Specialised commissioned beds • 2 patients in North East Specialised commissioned beds • 5 patients in Central Midlands Specialised commissioned beds • 2 patients in West Midlands Specialised commissioned beds

Individuals cared for in secure settings are subject to mental health legislation; therefore,

43 transfer for patients is dependent upon an improvement in their MH state and or risk profile. All patients are subject to the ongoing CTR process which will ensure active treatment is being delivered and that individuals are progressing on a clear treatment pathway. Regular meetings with specialised commissioning leads have been established to ensure smooth transition of patients through their care pathway

3.15.4 National Planning Assumptions LD Assessment & Treatment Beds Based on national planning assumptions, it is expected that no area should need more inpatient capacity than is necessary at any time to care for:

• 10-15 inpatients in CCG-commissioned beds (such as those in assessment and treatment units) per million population (expressed as bed nights 3650 to 5475) • 20-25 inpatients in NHS England-commissioned beds (such as those in low-, medium- or high-secure units) per million population (NHS England 2015)

Applying the planning assumptions outlined in Building the Right Support (2015) to the C&M system wide geographical area aim to reduce in-patient beds as follows:

Year 0 (2015/16) Year 1 (2016/17) Year 2 (2017/18) Year 3 (2018/19) as at as at as at as at as at as at as at as at as at as at as at as at as at 31/03/16 30/06/16 30/09/16 31/12/16 31/03/17 30/06/17 30/09/17 31/12/17 31/03/18 30/06/18 30/09/18 31/12/18 31/03/19 NHS England commissioned inpatients 55 55 54 54 53 53 52 52 52 51 51 50 50 Inpatient Rate per Million GP Registered Population NHS England commissioned*** 26.90 26.90 26.42 26.42 25.93 25.93 25.44 25.44 25.44 24.95 24.95 24.46 24.46 CCG commissioned inpatients 75 73 71 68 65 60 55 50 45 40 37 34 31 Inpatient Rate per Million GP Registered Population CCG commissioned*** 36.69 35.71 34.73 33.26 31.80 29.35 26.90 24.46 22.01 19.57 18.10 16.63 15.16 Total No. of Inpatients with learning disabilities and/or autism* (TCP level; and by TCP of 130 128 125 122 118 113 107 102 97 91 88 84 81 Total Inpatient Rate per Million GP Registered Population *** 63.59 62.61 61.15 59.68 57.72 55.28 52.34 49.90 47.45 44.51 43.05 41.09 39.62

Applying the planning assumptions outlined in Building the Right Support (2015) to each commissioning delivery system produces the ranges below.

Note: Figures are based on the lowest planning assumption of 10 beds per million populations, the highest of 15 beds per million populations and a mean of 12.5 beds per million populations.

Cheshire/Wirral projected LD NHS A&T bed activity with National Planning Assumptions applied ( Local GP registered population 1,078,886)

Actual Activity 2015/16 4052

Mean 4872

High 5876

Projected adult A&T Beds Low 3869

Commissioned capacity 8030

0 2000 4000 6000 8000 10000

 Cheshire/Wirral current commissioned capacity is 8030 bed nights, the equivalent of 22 beds.  Actual activity for 2015/16 is projected to require 4052 bed nights, or 11.1 beds. This activity rate is 190 bed nights above the lowest national projection but comfortably below Mean average national projection for Cheshire/Wirral of 4856 bed nights, or 13.3 beds.  There are plans to work with the current provider as they change the usage of current A&T beds to provide step up/step down services.

Mid Mersey projected LD NHS A&T bed activity with Nation Planning Assumptions applied (Local GP registered population 701,952)

Actual Acitvity 2015/16 1205

Mean 3157

High 3796

Projected Adult A &T Beds Low 2518

Commissioned Capacity 2920

0 500 1000 1500 2000 2500 3000 3500 4000

 Mid Mersey’s current commissioned capacity is 2920 bed nights, the equivalent of 8 beds.  Activity for 2015/16 is projected to be 1205 bed nights or 3.3 beds, significantly below the lowest national projection of 2518 bed nights for the Mid Mersey population.  As Mid Mersey system have reduced their in patients services over the previous 5 years (see section 3.15) any ongoing reduction of beds at this unit may put at risk the viability of the current patterns of provision. The issue of viability will need to be considered as part of future planning within the transforming care agenda and with other commissioners across the NW footprint i.e. GM & Wigan.  There are currently no plans at this stage to decommission any A&T beds from the Byron Unit or delivery system.

North Mersey projected LD NHS A&T bed activity with Nation Planning Assumptions applied (Local GP registered population 786,383)

Actual activity 2015/16 3285

Mean 3540

High 4270

Projected adult A&T Beds Low 2810

Commissioned capacity 3285

0 500 1000 1500 2000 2500 3000 3500 4000 4500

 North Mersey has a current commissioning current capacity is 3285 bed nights, the equivalent of 9.6 beds.  This currently sits between the low projection of 2810 bed nights and the mean of 3540 bed nights according to national assumption planning.  The challenge for North Mersey is the number of OAT placements for patients from this locality. The aim is to reduce in patient activity through repatriate of patients in the OAT placements closer to home.  In terms of in patient bed trajectories the ambition is that NHS A&T commissioned capacity for North Mersey could reduce from 9 to 7 by 2019 as out of area placements are repatriated.

3.15.5 Commissioning challenges As C&M is a large county there are a number of cross boundary issues with commissioning challenges which complicate the patient flows, notably:  C&M has patient flows into Staffordshire and North Wales  Wales is not subject to the national Transforming Care programme of work  There are patients who are registered out of area but live in C&M and vice versa  There is inconsistency in integrated Health and Social care teams across C&M  Some patient flows have been caused by lack of suitable services within the area for patients with complex needs  Acquisition of Calderstones Foundation Trust by Merseycare Trust with limited involvement in development of service model  The level of financial commitment involved with implementing and delivering the Transforming Care programme at a time of significant financial challenge across the local health and social care economy

3.15.6 Summary As of 31 March 2016, there are currently 130 patients from C&M in a variety of in patient settings and provider services as outlined below:

- NHS Provider Assessment and Treatment CCG commissioned beds - Independent ( Non NHS) spot purchased OAT CCG commissioned provision - NHS England specialised commissioned services

CCG commissioned inpatient activity/beds Should all CCG areas achieve an activity rate of 10-15 per million populations then CCG commissioned in patient activity across C&M could reduce to between 26-38 beds by 2019 for the total population of Cheshire and Merseyside in line with the Transforming Care activity plan and national assumptions outlined in Building the right support (2015).(See activity tracker )

NHS England North West Specialised Commissioning activity/beds

To achieve the national assumption of 20-25 inpatients in NHS England commissioned beds per million population (NHS England 2015), specialised commissioning services are outlining proposals for the re-provision in the North West of England which can be described as follows:

• Medium Secure – provision of a new purpose built medium secure unit, developed in partnership with NW specialised commissioning to be provided within the grounds of Ashworth Hospital as part of Merseycare NHS Trust

• Low Secure Services – a consultation is underway led by NHS England to ensure the options for future services are shared with all partners, the options under consideration are:  A single 60 bedded low secure facility for the North West  Three 20 bedded facilities for the North West  Six 10 bedded facilities for North West  Bespoke services designed for patients with specific needs which will include services for Women, ASD, Enduring Needs and Mainstream assessment and treatment

For Cheshire and Merseyside this programme of development will see a reduction in overall bed capacity. A trajectory for the next 3 years based on the discharge journey for patients and the rate of new admissions are being analysed by the North West specialised commissioning team but on prevalence and data so far it is anticipated that the trajectory will see an overall reduction of 5 beds.

The graph below illustrates the planned inpatient trajectories based on plans submitted by the Transforming Care Partnership. See submitted TCP activity tracker for further detail.

3.18 Describe the current system

This service baseline is currently reported via the 3 local geographical delivery systems. This has been undertaken to ensure we have captured the local historic commissioning arrangements and patterns of provision.

3.18.1 Cheshire/Wirral Commissioning system The main LD provider is CWP, providing a range of LD services as outlined below.

CWP has two assessment and treatment units providing specific inpatient assessment and treatment for people with learning disability; the Eastway Assessment and Treatment Unit in Chester and the Greenways Assessment and Treatment Unit in Macclesfield. There are 22 beds across the two units as outlined in section 3.15.1, of which 16 are commissioned by local C&M CCGs. The remainder of the beds are designated for out of area spot purchases.

Multi-disciplinary Community Learning Disability Teams operate across the Cheshire/Wirral locality. CWP has four Specialist Community Learning Disability Teams for Wirral and West Cheshire; with bases in Chester and Winsford, and for Cheshire East with bases in Macclesfield and Crewe. The team plan and provide a range of services for people with learning disabilities who experience additional health needs as well as advice and training for family, carers and support staff. These teams include community learning disability nurses, psychiatrists and clinical psychologists, speech and language and occupational therapists, physiotherapists, health facilitation nurses and Challenging Behaviour specialists.

CWP also provide adult respite care at Crook Lane Respite Unit in Winsford and Thorn Heys Unit in Oxton, Wirral. The respite units provide short breaks for adults with learning disabilities who have additional complex needs such as profound and multiple disabilities or challenging behaviour.

The short breaks service in West Cheshire is led by Vivo the social care provider company from Cheshire West and Chester Council. CWP provides specialist health input. Clients of the service in East and Wirral have been assessed as not having primary health needs as outside their short breaks they live in other settings with family or carers.

At present, the only NHS commissioned service for adults with autism (without learning disabilities) are diagnostic services. These are provided by an independent provider (Axia)

48 for the population of Eastern Cheshire, South Cheshire and Vale Royal. This service is provided by CWP for people living in West Cheshire.

Cheshire/Wirral commissioners recognise that there is a significant disparity in provision for people with autism following diagnosis as outlined below which will be addressed as part of the delivery plan:

Autistic Spectrum Disorder: For the population of NHS South Cheshire and NHS Vale Royal Clinical Commissioning Groups, the community paediatric team based at Mid Cheshire Hospitals NHS Foundation Trust provides diagnostic assessments for Autistic Spectrum Disorder up to 16 years of age but no routine post diagnosis follow up.

NHS West Cheshire Clinical Commissioning Group commissions paediatric services including ADHD and ASD diagnosis from the Countess of Chester Hospital.

Eastern Cheshire Clinical Commissioning Group commissions ASD and ADHD assessments from the CAMHS team provided by Cheshire Wirral Partnership Trust. There is currently an 18 month pilot ongoing to provide a new approach to the process of assessment, via a single triage service and onward progress through five clear pathways, with the aim of reducing waiting lists and providing a more integrated service. There remains however a gap in service in regards to routine post diagnostic follow up services.

Services for Children and Young People: CWP are commissioned by all five Clinical Commissioning Groups in the Cheshire/Wirral system to provide Learning Disability Child and Adolescent Mental Health Services for their population. This is a community based team that provides positioned support for children and young people aged 0-16 who have a severe learning disability, and whose behaviours cause difficulty for themselves and their parents/carers. Referrals to the team can be made by parents/carers or any professional who is working with the child.

East Cheshire NHS Trust provides Special Needs Nursing Services for the Eastern Cheshire, South Cheshire and Vale Royal area. CWP provide community services to the people with special needs within the NHS West Clinical Commissioning Group footprint.

In NHS West Cheshire Clinical Commissioning Group, the Community Paediatric Service provides assessment and medical treatment for children with Attention Deficit Hyperactivity Disorder and associated sleep difficulties. They also offer brief basic behavioural and sleep advice within the clinic setting and provide Attention Deficit Hyperactivity Disorder / behaviour/sleep leaflets. They refer to other services for associated comorbidities The service provides assessment and diagnosis for children with autism; as well as brief advice and medical treatment for associated sleep difficulties and referral to other services for associated comorbidities, Tier 2 Child and Adolescent Mental Health Service provide assessment and therapy.

The Learning Disabilities Team provide behavioural and sleep assessment and support for families and children who have severe learning difficulties Speech and language therapy and occupational therapy provide their services based on need following a referral. Some initial work has taken place in West Cheshire on reviewing the care pathways and some gaps have been identified.

All five Cheshire/Wirral system Clinical Commissioning Groups hold standard NHS contracts with CWP which will be renewed for a three year term with effect from 1 April 2016. The terms of the contract and schedules will continue to be reviewed on an annual basis.

CWP services are currently commissioned on a block contract basis by all five Clinical

Commissioning Groups however with variation of service specifications between all five Clinical Commissioning Groups. This will be addressed as part of the delivery plan.

3.18.2 Mid Mersey Commissioning System

The Four Borough Commissioning Alliance was established in 2010 to co-ordinate commissioning between the then 4 PCTs of Knowsley, Halton, St Helens and Warrington for Mental Health and Learning Disability Provision. The alliance was inclusive of PCTs and Local Authorities. This work has continued to date with local collaborative commissioning arrangements with 5 Borough Partnership. As Wigan CCG is a commissioner of LD services from 5BP further liaison with Greater Manchester is required to ensure alignment of TC plans and commissioning.

The Alliance aimed to redesign Learning Disability services by introducing a new Model of Care. This is based on a number of principles, including:

 flexibility and accessibility,  inclusion,  quality,  independence,  specialist health intervention innovative solutions to behaviour management within the community to support those within their homes/community placements for as long as possible admission as an in-patient as a last resort whilst ensuring inpatient admissions are not seen as an alternative to social care provision, for example respite care . Adults requiring additional inpatient support are assessed via the Green Light tool kit to sign post to the most appropriate service.

The Alliance, in developing its Model of Care, consulted extensively with Local Learning Disability Partnership Boards, placing service users at the heart of this process. Its Model of Care was published in summer 2011. The principle service provider is 5 Borough Partnership NHS Foundation Trust. Across the footprint other current Health and Social Care provision is commissioned through Local Authorities, PBSS Services, Social Care Providers, Social Landlords, Independent Hospital Providers and the Voluntary/Third Sector. The model also includes the promotion and development of education, health and social care plans that are in line with the national SEND reforms.

The main provider is 5BP with 1 assessment and treatment unit: Byron Unit. Through collaborative commissioning the mid Mersey alliance have made substantial efforts in reducing the number of in patients bed over the last 5 years as outlined in section 3.15

The current model of care recognises all of the 5 cohorts outlined in the national model; however it is recognised by Halton, Knowsley, Warrington and St Helens that further work is required in terms of redesign, commissioning and transformation to sustain positive performance, reduce admissions where appropriate and to optimise outcomes for people with Learning Disabilities.

3.18.3 North Mersey Commissioning System

North Mersey commissioning system have collaborative commissioning arrangements, with Liverpool CGG taking the lead commissioning responsibility on behalf of South Sefton, Liverpool, Knowsley and Southport and Formby CCGs.

The main LD provider is Merseycare with assessment and treatment provision provided at the 9 bedded STAR Unit.

Two Multi-disciplinary Community Learning Disability Teams operate across the Mersey Care foot print (Liverpool, North and South Sefton and Southport). The teams offer specialist assessment and interventions to adults with learning disabilities (including people with LD and Autism), their families and carers. The teams comprise of psychiatrists’, community learning disability nurses, Speech and Language Therapists, Occupational Therapists, Psychologists, Physiotherapists, Health care Facilitators. Clinicians are highly skilled with a number trained to provide PBS, Autism, Dementia and forensic focused assessment and interventions. The teams also provide consultation and training to external providers along with facilitating access to mainstream health services. The Learning Disability Service as a whole adopts a person centred rights based approach to the delivery of care and support.”

In South Liverpool Merseycare LD staff currently provides additional support to those individuals with a learning disability who have complex physical health needs in an existing LD provision. The site currently consists of 3 bungalows for 6 people and 3 houses for a total of 6 people that through future adaptations could be used for independent living training.

Across Sefton, Merseycare are commissioned by the local authority to provide two residential services with a total of 8 units. In addition they provide support for up eight people in a supported tenancy model.

3.18.4 Criminal Justice and Liaison Services There is a Criminal Justice Partnership Board facilitated by NHS England (Greater Manchester & Lancashire). C&M Director of Commissioning is a member of this group. However, there needs to be strengthened relationships to ensure C&M TC Plans are realised moving forward. There is a newly established Health & Justice Quality Group and this for a will be utilised to engage the C&M TC Plans.

Across the Cheshire and Merseyside footprint, NHS services work closely with the Police and Courts in providing assessment, support and diversion out of the criminal justice system for those deemed to be vulnerable through a mental illness and/or a learning disability.

The Liverpool and Sefton liaison service provided by Merseycare NHS Trust, in common with services in Cheshire, received additional funding in 2015/16, to support the Police and courts. The additional funding has resulted in a greater level of detection of and support to individuals with a Learning Disability in contact with the Criminal Justice system. That support ensures referral into LD services for treatment and advice to the courts in regards to sentencing options including deflecting individuals away from custodial sentences and into treatment services.

This service provision, though primarily targeted at the mentally ill, provides those with LD an alternative to custody. For a small number of individuals a custodial sentence leads to deterioration in prison and referral to specialist low or medium secure LD beds commissioned via Specialist Commissioning. Criminal Justice Liaison services can provide an alternative to custodial sentences and direct this activity entry into local non forensic LD services. 3.19 What does the current estate look like? What are the key estates challenges, including in relation to housing for individuals? The embedded documents below describe our current estate position across C&M

LD properties North LD properties - NHS E data return.xlsx CandM v3.xlsx

3.19.1 Cheshire/Wirral

Within the Cheshire/Wirral commissioning system, Wirral Local Authority has recently transferred assets along with service provision in its Local Authority Company which delivers day service provision, Wirral Evolutions. This includes 6 day centres. The company is a wholly owned subsidiary of the council currently with an ambition to move to Independence in 3 years.

Wirral Council also has a 20 bed respite service provision, Girtrell Court which is currently an option for closure within the council’s budget options proposals. We are aiming to have respite provided within the Independent sector, where people can use personal budgets to exercise choice and control. Work is already underway with CWP, Wirral CCG, Wirral Local authority and registered social landlord to develop an extra care housing facility in the community. See section 5.11 for further information.

CWP also have a 6 bed respite unit based at Thorn Heys in Birkenhead, where they provide respite care.

3.19.2 Mid Mersey Across the Mid Mersey commissioning footprint the current understanding of estates and the facilities available is clear. The Mid Mersey locality uses the Byron Ward at Hollins Park as the Primary NHS Assessment and Treatment facility. The focus over the next twelve months is to sustain the current position, however beyond this further work is required to review the amount of beds required, and to support further repatriation of individuals. Plans need to be developed in conjunction with Housing Strategy colleagues to ensure that there is appropriate housing options within local communities to meet the needs of the complex cohort of people that need to be repatriated; particularly individuals who are transferring from secure settings.

Housing is provided by registered landlords and individuals have their own tenancies. Further adapted accommodation is being built in some boroughs to support repatriation and provide accessible accommodation to meet specific needs of those with LD and ASC.

Some boroughs have also developed core and cluster/core and flexi style accommodation, which focuses on independence, individualised tenancies in one complex with 24hr oversight from a support provider.

Small residential homes are also commissioned for people with LD. Each area has existing framework agreements with their Social Providers. Some areas are also reviewing their existing frameworks.

3.19.3 North Mersey North Mersey commissioning system has recognised that a full review of all estate will need to be carried out in line with the delivery of the plan. This will be factored in to programme management. Liverpool City Council has submitted plans as to the new specifications for residential and nursing care and support alongside how supported living arrangements will be developed.

Contract Monitoring NEW Community Service Specification SERVICE SPEC NEW Framework Specialist ResSupport and QAFNurs MASTERCare v2.0 Copy 21122015.docSRN (21.12.2015) ver3.docx v2.0CONTRACT.docx amended 20116.doc A comprehensive social provider estates mapping outlying both NHS and independent provider properties is currently being undertaken by social care colleagues from across the Liverpool City Region. Full detail will be available in due course,

3.19.4 Challenges

The challenges for our housing and market development will be in relation:  to meeting the needs of people with complex and high risk profiles coming out of long stay in patients facilities including forensic services  the length of time required to develop sustainable community based alternatives to admission; particularly housing.  The need to make sure that patients don’t experience increased restrictions by being placed in community settings  the availability of suitable premises and skilled resilient providers  the need to develop a range of housing opportunities and supportive care providers with resilience to meet the challenges of this cohort  limited or lack of match funding  timescales

3.19.4 Next steps A full estates mapping will be undertaken and estates strategy developed across health and social care, informed by estates mapping already being undertaken by the local fast track sites.

3.20 What is the case for change?

3.20.1 Local Our case for change is based upon reviewing our current models of care and their effectiveness, assessing them against the national service model and reviewing the findings of the Joint Strategic Needs Assessment (section 3).

The JSNA recommendations (2016 p.8-12), assessing the evidence from strategies, national and local information sources. It also reflects feedback from local people, including self- advocates and carers, about what matters to them (Section 4.3).

In developing our plans we are mindful that each local geographical area will need to develop a local implementation plan that meets the needs of their particular population. As such there cannot be a ‘one size fits all’ solution.

There must be local discretion as to the best way to deliver improvement according to local need. As such the three local commissioning system delivery plans will reflect their preferred local approaches, providing a suitable ‘fit’ in line with Building the Right Support (2015).

We have also considered  Recommendations in national policy documents  Priorities identified through the C&M Learning Disabilities Self-Assessment Framework  Local strategic information used to identify gaps in support  The principles of the Integrated Personal Commissioning Pilot in Cheshire West and Chester  Local partnerships, for example, Vision 2020 in Wirral, which sets out a 5 year vision for reduced dependency on traditionally commissioned services with people maximising the use of their locality assets and natural networks to act and be more independent.  ‘I statements’ (Section4.3) ensuring the voice of our services users are heard

3.20.2 National strategies ‘’Delivering the Forward View: NHS policy Guidance 2016/17- 2020/21’’  ‘Deliver actions as set out in local plans to transform care for people with learning

disabilities including implementing enhanced community service provision, reducing in patient capacity and rolling out care and treatment reviews in line with published policy’  ‘As part of the transforming care programme, how will you your area ensures that people with learning disabilities are, wherever possible, supported at home rather than in hospital?’

The Government Mandate 2016/17  Mental Health, learning disabilities and autism. Overall 2020 goal: to close the health gap between people with mental health problems, learning disabilities and autism and the population as a whole. Building the Right Support (2015) identifies the need to provide good services for people with a learning disability and /or autism

3.20.3 How can the current mode of care be improved? The overall aim of our improved model will be to ;  Improve the quality of life  Keep people safe  Ensure individuals have choice and control  Ensure good support and interventions are available and in the least restrictive manner  Achieve equitable outcomes comparable to the rest of the population

We recognise that there are already areas of good practice currently being delivered across a number of C&M localities. These include:

 Access to a Learning Disability health facilitator across the area  Individualised Person – centred planning/integrated budgets including personal health budgets  Improved communication between Hospitals and Primary Care  Excellent sign up to delivery of LDDES in primary care including delivery of a standardised training package to all primary care staff  Work with main stream hospital providers on reasonable adjustments,  Health Champions (Training)  Services score high on CQC ratings for Caring and Effectiveness  Service users are routinely involved in recruitment within CWP and in assessing Services  a reduction in the number of people with learning disabilities in assessment and treatment services  Ongoing commitment from partners to joint working on the Learning Disabilities Self- Assessment Framework  National IPC pilot site (Cheshire West and Chester

We will maximise opportunities to build on the good practice to ensure consistency of approach and service provision across the TCP:

However there are a number of key opportunities to further develop health and social care / community facilities and support networks as outlined below;

3.20.4 Admission avoidance There is evidence across C&M in respect of a reduced in patient provision/Admission avoidance (see section 3.15). This is supported by a willingness to consider joint working and collaborative commissioning.

However, we will not be complacent about our achievements to date and will aim to consolidate our position in line with national assumptions as outlined in sections 1.1, 3.15.3 and 3.15.5., ensuring a sustainable future in patient provision. This will include further dialogue with Greater Manchester about the shared provision of in-patient provision at 2 of the 3 main NHS LD providers across C&M.

We have identified some significant gaps in terms of support to people who may be at risk of admission, including 24/7 crisis support and/or access to step up/step down facilities.

We will look to develop pathways to ensure support from both mainstream Mental health and learning disabilities services, providing flexible /enhanced ways of working to meet the needs of individuals, triggering early intervention and crisis response as required.

This will include developing dynamic all age risk registers which can support multi-agency complex care planning, development of services, care and support including lower level support for people with low level needs, and Autism, whilst ensuring person centred contingency plans, to reduce risk of admission.

3.20.5 Physical health and wellbeing There are areas of good practice across C &M where Cheshire and Wirral currently performs relatively well when considered in a national context (see section 3.3.)

Whilst the LDSAF has demonstrated improvement since 2011-12 there are three key areas where we need to continue to improve; these are:  Recording of learning disability status by health services, e.g. GP practices and screening programmes  Evidence of reasonable adjustments by services, such as lifestyle support services, primary and secondary health services.  Number and quality of Annual Health Checks and Health Action Plans completed by GP practices

As a TCP we will consolidate our position over the next three years, ensuring sustainable good practise for the future; building on work already undertaken within primary care to improve the uptake and quality of health checks and consider alternative ways to deliver these checks if improvements are not achieved.

We will also continue to work with Public Health England to improve uptake of cancer screening programmes among our population.

As a TCP, Cheshire CCGs together with CWP are currently carrying out a retrospective review of deaths among adults with learning disabilities, based on the recommendations of the Confidential Inquiry (CIPOLD) in 2014. The work will be completed in Summer 2016. Findings and recommendations will be reflected in our delivery plans. This will include the mobilisation at a local level of the service improvement phase of the CIPOLD inquiry (LeDeR Programme).

3.20.6 Development of health and social community services There is currently no consistent definition of the role and function of a Community Learning Disability Team across the TCP. As a result, local teams are based on models of support that pre-date much of the Transforming Care agenda.

As a TCP we have agreed to develop a consistent specification and standards for health and social care services that will reflect the national service model and deliver a consistent

55 quality of support; whilst allowing enough flexibility to reflect local need. This will be considered with regard to meeting the need of all ages.

We will further develop the Positive Behaviour Support service (PBSS) and training framework to support independent and statutory providers with the aim of reducing hospital admission or use of alternative services due to placement breakdown.

3.20.7 Children and young people’s services/Transition: As a TCP we will continue to develop support to parents and families, ensuring early intervention for children and young people with Learning Disabilities and Challenging behaviour is accessible.

Learning disability services between children, young people and adults are fragmented; therefore this is an opportunity for the TCP to develop pathways which support child to adult transition, the appropriate service(s) is engaged early in SEND support provision and where necessary in the joint assessment and commission arrangements to support Educational Health Care Plans, and supports access to the appropriate service via alignment with the CAHMS transformation programme.

3.20.8 Specialist commissioning There will be a continued need to working with the NHS England Specialist Commissioning team to develop pathways to support discharge of patients; this will include the continued development of appropriate forensic support for people in the community and at risk of admission. This is currently part of our CTR planning process with Specialised commissioning who are actively monitoring and progressing discharges in a safe and timely manner. However we are mindful that Specialised commissioning have no control over admissions directed by the court

3.20.9 Access to preventative/ proactive interventions There is a growing need to ensure criminal and justice diversion teams are accessible for people with a learning disability, and police liaison, street triage become a part of the offender pathway. As a TCP we will learn from the work currently being undertaken by Merseycare in providing a care and triage service with Merseyside police.

3.20.10 Commissioning and contracting services As a TCP, commissioning is not always based upon delivery of person-centred outcomes, with block contracts and lack of pooled budgets. Currently, assessment of health and social care need and the subsequent commissioning of relevant services for people with Learning Disabilities appear fragmented. Processes appear to be system not service user led, with commissioning based on the scope of the services already in place as opposed to the specific and holistic needs of people within the cohort.

One of the main aims of the Integrated Personal Commissioning project in Cheshire West and Chester is to develop the provider market so that people have a greater range of options to choose from and the potential to design a person centred service that reflects their needs. As a TCP we would learn from work undertaken by Cheshire West and Chester and move towards developing person centred commissioning as close to the person as possible, with the aim of offering personal health budgets and integrated health and social Care.

We will also utilise the learning from Mid Mersey commissioning collaborative in ensuring Positive Behavioural Support (PBS) is an integral part of the individual care pathway, and quality of life outcome measures are achieved.

As a TCP we will develop a provider framework, to ensure excellent standards of care are commissioned and delivered consistently across the TCP. Signing up to such a framework

56 will be considered for inclusion within contracts and support future quality monitoring.

3.20.11 Personal health budgets At present, only a small number of people with learning disabilities access Personal Budgets. The Integrated Personal Commissioning Pilot in Cheshire West and Chester provides us with an opportunity to share learning across the TCP on the use of personal budgets to increase people’s choice and control over the support that they receive. Cheshire East Council are currently working on a joint policy with NHS Eastern Cheshire CCG and NHS South Cheshire CCG for the implementation of personal budgets, including personal health budgets, attached to Education Health and Care plans.

3.20.12 Developing the provider market Through the process of Care and Treatment Reviews, we have identified that many local care providers are poorly equipped to deal with people in the event that their behaviour becomes more challenging. The development and resilience of care staff and providers to deliver high quality care, safe person centred care is essential.

There is an opportunity to open up the market and develop opportunities, including the development of community support for people with low level needs, not usually known to health or social care. This will include looking to develop further opportunities for a good meaningful everyday life, supporting community resources, activities, education, training and employment.

This is an area of development, with Liverpool City Region (6 Local authorities) currently undertaking a baseline mapping of social housing/care providers which will be utilised as part of this work as we progress with our delivery plan.

3.20.13 Workforce development Throughout the development and delivery of our model, there will be a need to consider training and development needs of the workforce, people with and learning disability and their families. This will be developed to include training to meet current / future needs and new roles as they develop; such as the health and social care navigator role. There is an opportunity across the TCP to develop this role further, exploring how the role will work with all cohorts of people’s needs.

Positive Behaviour support training has already been identified as a priority and as a TCP we will develop a Positive Behaviour Support training framework to support independent and statutory providers with the aim of reducing hospital admission or use of alternative services due to placement breakdown.

3.20.14 Access to Education, Employment or Training Through the engaging of local employers, educational organisations and local communities we can begin to focus on improving opportunities to people with learning disabilities to enable them to live full and active lives.

Access to education, employment and training will be prioritised as part of our delivery and will reflect service users and families priorities as described in out coproduction examples (section 2.5).

Please complete the 2015/16 (current state) section of the ‘Finance and Activity’ tab of the Transforming Care Activity and Finance Template (document 5 in the delivery pack) Any additional information Completed and submitted

4. Develop your vision for the future

4.1 Our aspiration is that:

“Across Cheshire and Merseyside we are here to make a difference to the lives of people with learning disabilities and give confidence to their loved ones that we are going to do this.”

The C&M Transforming Care Partnership vision is consistent with the national service model and is that:

“People with a Learning Disability and/or Autism, including people with complex and challenging behaviour, can lead fulfilling lives in the community supported by ‘ordinary’ services with appropriate support from staff with skills to support them and their needs in their local community, whenever possible.”

This care and support will be:  Closer to home  In line with best practice models of care  Personalised and responsive to individual needs over time  Based on individuals’ and families’ wishes  Value for money

This will be achieved by: • Developing an integrated commissioning model • Creating a menu of options to enable and create control and choice • Ensuring a whole life approach • Using the ‘I Statements’ when commissioning services • Ensuring basic care and access to mainstream services is a right for everyone with a learning disability and or Autism • Linking in national and local models of good practice

The outcome aspiration across C&M TCP is to:  Improve quality of care  Improve quality of life  Reduce reliance on inpatient service (or realigning inpatient capacity as appropriate to the needs of the population)  Improve Patient/carer/family experience  Achieve equitable outcomes comparable to the rest of the population

4.2 Our Strategy Our Strategy is based on the nine core principles described in Building the Right Support (2015):

4.2.1 I have a good and meaningful everyday life.  Local Authorities will commission supported employment services that can meet the needs of this group.  Commissioners will work with and manage mainstream activities/services to find ways to make them accessible, in line with Equality Act duties.  Proportionate risk taking will be encouraged  Commissioners will ensure that service specifications are based on person-centred

outcomes.

4.2.2 My care and support is person-centred, planned, proactive and coordinated.  Co-production will be embedded throughout commissioning processes.  Commissioners will risk stratify their local population of people with a learning disability and/or autism.  Micro-commissioners should ensure that the person they are supporting has a single person-centred care and support plan, not just those on the Care Programme Approach  Commissioners will ensure that everyone is offered a local care and support navigator or key worker.  Commissioners will ensure a multi-disciplinary approach to Education, Health and Care plans, not leaving this only to education

4.2.3 I have choice and control over how my health and care needs are met.  Care will be provided in the community and as close to home wherever possible. In the event that care cannot be provided within the community, a clear rationale will be given.  Commissioners will be planning for, and delivering the offer of, personal budgets, personal health budgets and integrated personal budgets beyond rights guaranteed in law.  Clinical Commissioning Groups will have a ‘local offer’ for how to expand the use of personal health budgets; this will include people with a learning disability  Commissioners will work across sectors to develop our community infrastructure, and will consider what additional or different local services are needed to ensure that people with personal budgets have a range of services to choose from.  Service users will be at the heart of decision-making process and will be supported in managing their own personal budget. Person centred plans will be co-produced.  Provision will be commissioned along individual care pathways to meet a robust outcomes framework  Assessment processes will be streamlined  Budgets and care plans will enable maximum choice and control for people with learning disabilities and/or autism  Choice and control will be at the heart of all that we do and people will be supported much earlier to improve their quality of life  Care and support will always be well coordinated, planned jointly and appropriately resourced  Commissioners will be extending the offer of advocacy through investment in non- statutory advocacy services and should ensure statutory and non-statutory advocacy is available to people who are leaving a hospital setting.  Commissioners will ensure that advocacy services, including peer advocacy, are independent and provided separately from care and support providers  Community Learning Disability Teams are commissioned to provide training and support to people with learning disabilities and their families in order to help them regain control over their own lives and make their own decisions (e.g. the champions health programme)

4.2.4 My family and paid support and care staff get the help they need to support me to live in the community.  Children’s commissioners will ensure availability of early intervention programmes, including evidence-based parent training programmes.  Children’s commissioners will ensure availability of a range of support and training for families and carers.  Children’s commissioners will provide flexible and creative short break/respite options.  Children’s commissioners will work with their local providers to develop models of alternative short-term accommodation.  Commissioners will develop a group of social care preferred providers that meet the needs of people with a learning disability and/or autism.  Local authorities will develop Market Position Statements with an explicit focus on this group  A provider will be commissioned to provide training and consultancy to local providers, in order that local organisations have confidence to support people during episodes of challenging behaviour.  An enhanced provider market including the development of social capital and investing and working in true partnership with local voluntary community groups  Elimination of waste, and delivering greater efficiency and value for money across the whole system  Robust and consistent performance and quality management of the provision of care  Better integration and quality of care and support, including better user and family experience of that care.

4.2.5 I have a choice about where I live and who I live with.  Our aspiration to support everyone to have their own front door, if this is their preference  Commissioners will co-produce local housing solutions leading to security of tenure that enable people to live as independently as possible, rather than in institutionalised settings.  Clinical Commissioning Groups will consider allowing individuals with a personal health budget to use some of their budget to contribute to housing costs if this meets a health need and is agreed as part of the individual’s care and support plan.  Commissioners will work with housing strategy colleagues to ensure strategic housing planning.

4.2.6 I get good care and support from mainstream health services.  We will support people to develop self-reliance and live independently in their community by keeping them physically and emotionally well and supporting self- management;  Commissioners will ensure that people with a learning disability are offered Annual Health Checks.  Commissioners will ensure that everyone has the option of a Health Action Plan, and are promoting the use of Hospital Passports.

 Commissioners should ensure that the Green Light Toolkit audit is completed annually, and an action plan developed.  Commissioners will ensure that practices and care and support pathways within mainstream primary and secondary NHS services are ‘reasonably adjusted’ to meet the needs of this group, in line with Equality Act duties, and are routinely monitoring equality of outcomes.  In the event of an unexpected death, this will be reviewed in line with the recommendations of the Mazars report (2016) and learning will be shared with services involved.

4.2.7 I can access specialist health and social care support in the community.  Commissioners will ensure the availability of specialist integrated multi-disciplinary pathways for health and social care support in the community for people with a learning disability and/or autism, covering all ages.  Specifications will reflect a focus on earlier intervention and prevention and avoiding crisis to ensure that people are supported in the community wherever possible.  Commissioners will ensure that health and social care support in the community is provided by people that have the right skills, capacity and resilience to provide the necessary care management support to this group.  Commissioners will ensure that specialist health and social care support includes an intensive 24/7 support function provided by staff with appropriate skills and resilience who are able to respond in the event of a crisis  Commissioners will ensure inter-agency collaborative working, including between specialist and mainstream services.  People with more complex needs, including those in receipt of Continuing Health Care, receive enhanced service coordination to reflect the complexity of their conditions/needs.  Commissioners will agree a consistent service specification and performance monitoring arrangements for Community Learning Disability teams across the locality.  Ensure that a provider is commissioned to deliver Positive Behaviour Support Training and ongoing support to the provider market.  Use risk registers to identify people most at risk of admission due to challenging behaviours in order to prioritise Positive Behaviour Support Training and proactively offer support to providers working with these clients.

4.2.8 If I need it, I get support to stay out of trouble.  Commissioners will ensure that mainstream services aimed at preventing or reducing anti-social or ‘offending’ behaviour are making reasonable adjustments to meet the needs of people with a learning disability and/or autism, in line with Equality Act duties, and are routinely monitoring equality of outcomes.  Commissioners will ensure the availability of specialist health and social care support for people with a learning disability and/or autism who may be at risk of or have come into contact with the criminal justice system, offering a community forensic function for this group.  We will review capacity within existing diversion schemes to ensure they are able

to cover the whole of the C&M footprint

4.2.9 If I am admitted for assessment and treatment in a hospital setting because my health needs can’t be met in the community, it is high-quality and I don’t stay there longer than I need to.  Commissioners will ensure that hospital admissions are supported by a clear rationale of assessment and treatment, and desired outcomes, and that services are as close to home as possible.  Commissioners will agree a service specification for Assessment and Treatment services across the locality, to include performance monitoring tools  Commissioners will be working with individuals, families/carers, clinicians and local community services to ensure that the discharge planning process starts from the point of admission, or before.  Commissioners will be ensuring the appropriate CTRs are taking place and are of a high quality, in line with NHS England policy. This will include the use of pre admission and /or blue light CTRs were appropriate.  Commissioners will ensure that support for families and carers are part of any commissioning framework  Commissioners will ensure that there are viable alternatives to hospital admission available within each locality. These may include crisis respite facilities (step up / down) and would also build in a safety net for times that people need a break from their current living arrangements when hospital admission is not required.  A process will be agreed locally to address delayed discharges including shared definitions and escalation processes  Ongoing liaison with commissioners of secure services to chart progress & plan for discharge  Resources released by reducing demand for inpatient will be re-invested into alternative models of support that are proactive and focus on crisis prevention and avoidance of hospital admission.

4.2.10 Outcome Measures See trajectories and possibility for extending bed closure programme up to 2019 in section 3 and submitted activity and TCP milestones tracker.

What outcomes will What will the change be? How improvement change? against each of these domains will be measured Reduced reliance on inpatient services

Reduction in : Reduction in admissions to in To monitor reduced  admissions to in patient LD beds in line with BRS reliance on inpatient patient LD beds trajectories services, we will;  Number of commissioned LD Individuals who are currently in  Establish baseline inpatient beds hospital are discharged to less standards and  Length of stay restrictive settings monitor performance  Use the Assuring A reduced length of stay Transformation data

set There will be Increased uptake of alternative  QA of CTRs developments in : models of support  alternative models of support, including crisis prevention, step up/step down provision  Systematic use of Positive Behaviour Support to prevent escalation up to crisis point  Compliance with national Care and Treatment Review policy

Improved quality of care There will be systems in place to ensure : 100% of people eligible for a Care To monitor quality of  Compliance with and Treatment Review will receive care, we are supporting national Care and review within agreed timescales and the development of a Treatment Review with a full panel basket of indicators policy exploring how to measure  Continued year on 100% of people in inpatient settings progress in uptake of year improvement will have discharge plans (including personal budgets in health checks dates) in place from admission (including direct and health action payments), personal plans % increase in the uptake of health health budgets and,  An increased checks in primary care where appropriate, uptake in screening integrated budgets; and programmes Monitor the quality of health checks strongly support the use including with, benchmarking and CCG/GP by local commissioners of Immunisations and feedback quality checker schemes vaccines and Always Events  Increased use of % reduction in people experiencing personal budgets complications from long term health including Integrated conditions Health equalities Personalised Framework Commissioning % People with eye conditions who  Successful have accessible appointments at Benchmark data to be commissioning of optometry services used to set standards a learning disability and aspirations for each eye pathway % reduction in the number of people of these areas locally across C&M with learning disabilities who die of cancer Patient outcome measures e.g. WHO- % increase in the number of people QOL and clinician rated

who access personal budgets outcome measures e.g. HONOS-LD

Improved quality of life Implement the findings % reduction in avoidable and Data on Personal budget and recommendations premature deaths uptake numbers from the Cheshire Learning Disability Local processes agreed for ongoing Service user feedback Mortality review review of unexpected deaths (Summer 2016) & Evaluation of Positive CIPOLD report (LeDeR % increase in the number of people Behaviour Support pilot) who access personal budgets training

Use of Personal Service user experience of using Health Equality budgets personal budgets Framework data Commissioning to give individuals greater % Reduction in number of Jobcentre statistical choice and control placements breaking down database.

Commission support, Evidence that Positive Behaviour Registered Social training and Support training is being used to Landlord tenancy consultancy to prevent escalation agreements. providers on Positive Behaviour Support to Evidence of positive outcomes Increase in respite reduce incidence of based on Health Equality packages and Carer placement breakdown Framework Scores support.

Use of Health Equalities Framework by Community Learning Disability Teams

Access to Education, Employment or Training will increase

Individualised housing tenancies will increase.

Carers respite and support Improved service user /family experience Increase in reasonable adjustments across People give positive feedback about Learning Disability Self- health and social care their experience of using services Assessment Framework Feedback from service People will have the users and family forums

64 opportunity to be involved at every stage Coproduction/confirm and of planning and challenge feedback delivering their support. Friends and family test

Please complete the Year 1, Year 2 and Year 3 sections of the ‘Finance and Activity’ tab and the ‘LD Patient Projections’ tab of the Transforming Care Activity and Finance Template (document 5 in the delivery pack) Any additional information Completed and submitted

4.3 Describe any principles you are adopting in how you offer care and support to people with a learning disability and/or autism who display behaviour that challenges.

To deliver this programme of work, the organisations commissioning and providing care and support across the C&M TCP will work to a set of overarching principles as described in sections 4.2.1- 4.2.9

In line with the views and aspirations of service users, their families and carers, as a TCP we are committed to a continued delivery and redesign of high quality learning disability services. A high quality service means that people with learning disabilities or autism and behaviours that challenge will be able to say:

 I am safe  I am treated with compassion, dignity and respect  I am involved in decisions about my care  I am protected from avoidable harm, but also have my own freedom to take risks  I am helped to keep in touch with my family and friends  Those around me and looking after me are well supported  I am supported to make choices in my daily life  I get the right treatment and medication for my condition  I get good quality general healthcare  I am supported to live safely in the community  Where I have additional care needs, I get the support I need in the most appropriate setting  My care is regularly reviewed to see if I should be moving on  I am happy

Across Cheshire and Merseyside the organisations involved in the Transforming Care Partnership have agreed to work to a set of overarching Good Commissioning Principles as described below :

 Understanding that people using services, and their carers and communities, are experts in their own lives and are therefore essential partners in the design and development of services. Good commissioning creates meaningful opportunities for the leadership and engagement of people, including carers and the wider community, in decisions that impact on the use of resources and the shape of local services.  Convenes and leads a whole system approach to ensure the best use of all resources in a local area through joint approaches between the public, voluntary and private sectors.  Achieve through leadership, values and behaviour of elected members, senior

leaders and commissioners of services and is underpinned by the principles of coproduction, personalisation, integration and the promotion of health and wellbeing for all.  Ensure a vibrant, diverse and sustainable market to deliver positive outcomes for local people and communities. It is concerned with sustainability, including the financial stability of providers.  Evidence what works; it uses a wide range of information to promote quality outcomes for people, their carers and communities, and to support innovation.  Provide value for money by identifying solutions that ensure a good balance of quality and cost to make the best use of resources and achieve positive outcomes for people and their communities.

5. Implementation planning Proposed service changes (incl. pathway redesign and resettlement plans for long stay patients) 5.1 Overview of your model of care The model of care is based on the principle that people with a learning disability and/or autism in Cheshire and Merseyside should lead as fulfilling lives as possible in the community, supported by universal services.

Our model is founded on the principles of Transforming Care (DH 2015) Valuing People (DH 2001), Valuing People Now (DH 2009) and reflects those principles enshrined in the National Service Model outlined in ‘Building the Right Support’ (2015). It is also based upon the results of ongoing co-production and consultation/engagement work (sections 2.5 & 4.3). The overarching principles and strategies described in sections 4.2 and 4.3 are agreed across the C&M TCP.

The model focuses on a number of key strands:  Reduced reliance on in-patient beds  Access to mainstream healthcare services  Effective prevention and early intervention  Person centred care and planning  Consistently highly skilled, confident and value driven workforce  Planned, proactive and co-ordinated care in the community  Choice and control being at the heart of all service provision and planning

5.2 How is the model different? Services for people with a learning disability and/or autism/challenging behaviours in Cheshire and Merseyside have gone through significant change over the last few years, with the closure of learning disability A&T units and changes in social care provision (see sections 3.15.2 & 3.18.2).

At this stage of the process we can identify a number of key elements that need to be enhanced, replicated or put in place to enable us to fully implement the national service model (2015).

5.2.1 Reduced reliance on in-patient beds Whilst an overarching aim of this programme is to reduce reliance of inpatient care, there will still be times when this is necessary and beneficial to the patient. It is important to note that services for people with a learning disability and/or autism across C& M have undergone significant change over the last few years, with the closure of learning disability A&T units and changes in social care provision (see sections 3.15.2 & 3.18.2).

A review of patients with extended stays in assessment and treatment units has already commenced across the TCP to establish the reason for length of stay. In some cases there is evidence to suggest that some individuals would have benefited from complex care/rehabilitation support. There may be a basis – possibly regional – for developing a small number of complex care beds with a full MDT. Working with LD professionals the focus would be on developing support packages to settle people back in the community and used as part of a step down process for people placed out of area as part of a transition plan, as well as preventing people from going out of area. Funding would be on an individual basis agreed with commissioners.

We expect that all admissions for assessment and short-term treatment will be with our current three NHS provider A&T units across C&M. However ongoing scoping has recognised that to operate the two current assessment and treatment units in line with the appropriate national in patient bed assumption for the Cheshire/Wirral system area would not be viable. Therefore, one assessment and treatment unit could provide a wide range of assessment and management options through a full MDT, in an enhanced personalised environment. Stays would be as short as possible, with close links to the intensive support function and step-down services.

Mid Mersey system have reduced their in patients services over the previous 5 years (see section 3.15) However such an ongoing reduction may put at risk the viability of the current patterns of provision. The issue of viability will need to be considered as part of future planning within the Transforming Care agenda and in conjunction with Greater Manchester TCP.

In some cases, individuals will need to be admitted to the NHS England commissioned beds if; • Their behaviour cannot be managed safely within an assessment and treatment unit • Their admission to forensic inpatient provision is directed by the Courts • Their admission to forensic inpatient provision is direct from prison

We will continue to work with NHS England Northwest Specialised Commissioning to develop a robust pathway with specialised commissioned services (e.g. forensic units), so that people are able to be stepped up and down as appropriate, with early and co-ordinated discharge planning.

As a TCP we are committed to ensuring individuals are living as close to home as is feasible. Work has already commenced across the C&M TCP on reviewing the 27 OAT patients currently in OAT in-patient beds (section 3.15). Some areas across the TCP have enhanced operations around Clinical Coordination and CTR’s to oversee repatriation, ensuring timely discharge from inpatient units is achieved. The role will include coordinating “blue light reviews” as appropriate and post admission CTR’s. It is recognised that further work is required across health and social care to meet our aspiration of care closer to home

5.3.2 Community Service provision The emphasis on community provision over inpatient settings will mean that the size and extent of community provision relative to inpatient provision will be further enhanced with a focus on the following three cohorts:

a) The current in-patient cohort, including those in forensic settings The community provision will need to accommodate those individuals previously served by Inpatient settings, so individuals can have an improved quality of life, improved quality of their care and support and be safe; Where possible, individuals should live in their own home, with minimised. in-patient admissions/readmissions b) The current community cohort The community provision will need to keep people with a learning disability and/or autism living well in communities, preventing deterioration in their wellbeing and crises so that their need for in-patient services is reduced only to when those services are the best option for the individual. c) The wider learning disability and autism population This is the cohort that is less well known to services, with the exception of Primary Care. Mainstream services and community networks will need to support people with a learning disability and/or autism living well in the community without the need for specialist services where at all possible.

This will require community provision to be proactive, intervening early to reduce need, including addressing the underlying causes of behaviours so that the frequency and severity of challenging and offending behaviour is reduced. This will be helped by effective risk stratification of the population, together with robustly developed registers of those at risk of admission.

To meet this requirement we will ensure that our local comprehensive community provision has: - An appropriately resourced Community Learning Disability Teams with accessible specialist professional support - The capacity to respond to crises 24 x 7 - Accessible resources to facilitate effective support for people with complex and challenging behaviour - Policies and protocols for the prevention of placement breakdown - Respite / short breaks for carers of people with challenging behaviour - In patient service the provides timely Assessment and treatment leading to discharge

5.2.3 Integrated Community Learning Disability Teams We will ensure there are appropriately resourced Community Learning Disability Teams (CLDTs) with accessible specialist professional support, working to a consistent specification and quality standards across the C & M TCP to deliver the following key components of care: - Work with those individuals who present as challenging and those at risk of admission ensuring appropriate management plans, including crisis plans are in place and delivered. - Support Primary Care and Hospital services in delivering high quality health services to promote and maintain good health and well-being for people with learning disabilities. This includes access to mainstream health screening services, encouraging individuals to attend of GP Health checks when offered and supporting health providers to make reasonable adjustments to promote inclusivity of those with a learning disability and / or autism - Proactively work with adolescents about to transition to adulthood to ensure such a transition is smooth and well managed.

5.2.4 Intensive Support /24/7 crisis response Locality-based intensive support teams would be charged with providing emergency and

68 planned urgent support to prevent hospital admissions. Intensive support would include existing specialist nurses and associate practitioners in community teams, working closely with assessment and treatment and short breaks services. Intensive support could be developed as specialist teams, or as a function within existing Community Learning Disability Teams or existing Crisis Resolution and Home Treatment Teams which currently operate in mental health services, to provide a seamless crisis pathway.

We will ensure that CLDTs play a key role in helping to support and plan for clients at particularly vulnerable periods of their life, for instance, interaction with the criminal justice system, and for those clients that are also known to mental health services. We will explore the work undertaken locally in Sefton (section 3.13) using the findings to develop or redesigned further services and processes for the LD /ASD population to avoid people with LD/ASD entering the Criminal Justice system

5.2.5 Complex Rehabilitation & Care Team Finding opportunities for complex users of services would be an extension to the role of the existing Complex Rehabilitation & Care team, incorporating health care coordinators and social workers and other professionals such as housing. The function would be involved in the strategic planning of support systems for clients with highly complex needs; to prevent people being placed out of area and returning people from out of area placements where appropriate. It would work closely with any complex care function and monitor care packages. As a TCP we will address any potential identified gaps in the delivery of this service.

5.2.6 Assessment ,treatment and complex care We will develop a stepped range of community support services to enable people to live at home in the community. This will prevent unnecessary hospital admissions and support the reduction of inpatient beds to the appropriate level based on population as discussed in section 3.15.3.

5.2.7 Positive Challenging Behaviour Service There is variable provision of Positive challenging behaviour services (PBSS) across the C&M TCP (Sections 2.26, 3 and 3.18). We will utilised the outcomes of the service developed and delivered successfully across Mid Mersey and explore transferability to the rest of the TCP.

Further support for people in their home and for families requiring psycho therapeutic intervention support (to compliment PBSS) is required across the footprint. Whilst practitioners within existing Community Learning Disability teams, many have skills pertinent to the assessment for and delivery of behavioural interventions, this is part of the generic skills mix and no dedicated support is provisioned.

It is recognised that a dedicated practitioner role within existing services with a remit to coordinate local resources and professional groups could enhance current delivery of and deployment of a PBS model of working across the TCP.

5.2.8 Transition Arrangements We will ensure that we have in place robust and sufficiently resourced transition arrangements. These will be consistent with the objectives of the current national policy and guidance and have the support of all of the relevant services for children and adults.

Young people with behaviour that challenges will be the subject of focused attention and support. The arrangements will specify that no young person is placed in a distant residential school or other distant placements when their needs can be met effectively nearer to home.

Effective transition support will be based on person-centred planning and partnership working and place young people’s needs and aspirations at the centre of the transition process. This will help the processes of consolidating identity, achieving independence, establishing adult relationships and finding meaningful occupation.

We will ensure that the necessary work is undertaken to build the capacity and confidence of local communities to support young people with more complex needs, specifically children, young adults, and those in contact with the criminal justice system.

We recognise that there are currently no Child and Adolescent Mental Health (CAMHS) inpatient beds for children and young people with learning disabilities in North West England resulting in individuals being placed out of area. Subject to modelling there may be case to develop a small number of these specialise beds to support our children and young people close to the area. Please note: At this stage commissioners have made no commitment to this proposal and would expect to see data to demonstrate the need for this service.

5.2.9 Short Breaks A new model for short breaks will be developed across the TCP; subject to further consultation. The model would provide four types of support:

a) Complex – planned short term support for people with complex physical health needs and behaviour that challenges, which live with carer’s in the community. Support would be delivered with specialist health input as and when required from a multi-disciplinary community LD team. b) General – planned short term support for people who live in the community with family or carers. This would give carers a break from their caring responsibilities. Personal budgets could be considered as a way to access short breaks away and holidays. Services would be provided by partner agencies experienced in this field. c) Step-up and Step-down – Step-up services through integrated delivery, with input from an intensive support team/function and community services when and individuals’ needs cannot be met at home during a time of crisis. Step-down services would provide short-term step-down from a hospital setting when assessment and treatment is complete, as part of the transition to a community setting, or when an individual becomes homeless following a hospital admission. d) Emergency - Unplanned support when an individual cannot remain in their own home due to carer illness or other emergency situation, until appropriate community support can be reinstated.

5.2.11 Access to Mainstream/Universal Services. We will build on the work outlined in Section 3.3 to ensure that individuals with a learning disability and/or an additional need will be able to access the most appropriate service for their need, be it a physical health need or a mental health issue. For example we will ensure that somebody with a primary mental health need can be treated through mental health services (community or inpatient) rather than be placed into a learning disability service. Tools such as the “Green Light Toolkit” will be used to measure whether this is happening.

We will ensure that universal health services such as primary care, GPs, dentistry and optometry have an awareness and understanding of how to support people with learning disabilities and/or autism and address their needs as they would with any other customer or user of services.

The same principle should apply to other universal services such as libraries and housing services. The role of universal services will be crucial in supporting people to live fulfilling lives in the community and awareness-raising and basic training could be used to help address issues following a stock take of issues and barriers.

5.2.12 Post Diagnostic Support for ASD /ADHD Post Diagnostic support for ASD/ADHA has been identified as a service gap across the C&M TCP (sections 2.43, 2.5.5 and 3.18.2). A model for ASD has been proposed by 5 Boroughs Partnership NHS Foundation Trust, which focuses on augmented services and support for people once they have received a diagnosis. The development of such services is cited in the “Think Autism” national strategy. Stakeholders across the C&M TCP will look to develop this service further.

5.2.13 Developing the Market. We will ensure that there is a greater choice of social care providers in the TCP area with the range of skills competencies and resilience to successfully support people with a learning disability and other complex needs. Commissioners are planning on holding several market engagement events in the coming months to explain future intentions and stimulate interest from providers in coming to the area.

5.2.14 Personal Budgets/Personal Health Budgets (PHBs). We will encourage greater take up of PHB’s to provide more flexibility for people with a learning disability to design and control their own package of support

5.2.15 Workforce Development. We will ensure that our services invest in training for the direct care staff of the service. Where services have accepted that people with complex needs and challenging behaviour should be a priority they will ensure that all staff are competent in working with them, and are equipped to understand the behaviour and to respond appropriately.

Dedicated training will be provided to staff across health, social care and other services to help them understand the needs of people with autism, those with a learning disability and autism and those with autism but no learning disability.

We will commission Positive Behavioural Support training for independent and statutory providers who support people with behaviour that challenges. NHS Wirral Clinical Commissioning Group have already developed proposals for the delivery of such training, which could be rolled out to the rest of the TCP.

5.2.16 Peer Advocacy We will strengthen and enhance the existing offer of peer advocacy, in order for people with Learning Disabilities and Autism to continue to contribute to the respective LD/ASD agenda’s across Health and Social Care.

5.2.17 Joint working Where it is necessary to devise a package of care to ensure that an individual can be supported safely and effectively within their own home or a community setting, we would expect our providers to work together with other professionals to plan this package and to review its effectiveness over time. As part of this we would be looking for our community based teams to build up a good knowledge of and relationship with community assets and partners, to further promote independence and keep the person safe and well within the community.

5.2.18 Outcomes based commissioning As the C&M TCP, commissioners are committed to move towards more outcomes-based service delivery, and services without age boundaries. We would look to, our services users and providers to work with us to achieve this, supporting us to develop and measure against meaningful outcomes.

5.2.19 Management Support and Commitment We will ensure that services are well organised and managed to deliver an individualised service through skilled staff. They will have a committed group of professional and front-line staff, working with the sustained support of senior policy-makers and managers. This will include looking to develop/commission services in a different way , developing the provider market and commissioning new services to meet the needs of all patient groups, including children, young adults, and those with more complex needs, working closely across multi- agencies.

5.3 Assumptions Commissioners across the C&M TCP anticipate that the current main 3 NHS providers of LD /Autism services will continue to provide a significant proportion of services in the future. However consideration will be given to integrated working with providers from other sectors (including social care and the voluntary, third and independent sector) as well as with service users and families.

Commissioners will work collaboratively towards developing the market to ensure a broader range of options are available to people who wish to have more choice and control over the support they receive.

We are mindful that each local geographical area will need to develop a local delivery plan that meets the needs of their particular population. As such there cannot be a ‘one size fits all’ solution. There must be local discretion as to the best way to deliver improvement according to local need. As such local commissioning systems will develop a delivery plan that reflects the preferred local approaches in coproduction with all stakeholders to provide a suitable local ‘fit’ in line with Building the Right Support (2015).

5.4 What new services will you commission?

Access to national Transformational funds will be integral to the development and support of initiatives across the C&M TCP, not only to maintain current sustainability but to continue progression in line with Building the Right Support (2015) requirements.

Given the significant cost pressures on all organisations, the main challenge for C&M TCP is to identify how we will source the local finances required for the commissioning of new local services. The requirement to match fund Transformation Fund bids means we are not able to make immediate bids, as a high proportion of TCP partners are unable to commit to match funding. This is disappointing and we would like to be able to bid for our population share of the Transformation Funds without the requirement to release resources upfront as match funding.

Despite the lack of /limited investment , initial discussions with key stakeholders across the C&M TCP have indicated the following priorities to be addressed:

5.4.1 Local commissioning priorities Priority 1: Less reliance on inpatient beds We aim to reduce reliance on inpatient beds in line with our projected bed reduction trajectories (see section 3.15) via a number of strategies:

a) Care and Treatment Reviews will become systematic and the necessary infrastructure developed to support their delivery. We are currently encouraging our providers to explore reciprocal arrangements with other Trusts to ensure effective use of resources. b) The plan will look to address delayed discharges and develop an appropriate

escalation policy and process that triggers appropriate and proportionate to the needs of the individual. c) Development and delivery of crisis/step up/step down care d) Following the outcomes of the OAT project C&M will look to repatriate a number of individuals closer to home (were possible) thus reducing the number of OAT placements and in patient bed usage. e) Increase the capacity of community based support to prevent people being admitted to hospital f) The proposals for the clinical model and management of the numbers of inpatient beds for low secure services will include how care will be provided for those people who will continue to need care in some form of secure setting. Detailed proposals will be further developed following the completion of the NHS England consultation in partnership with the North West TCP’s, providers, stakeholders and all communities g) Make use of contractual levers to reduce number of delayed discharges and inappropriate admissions

Any financial savings to health partners made as a result of a reduce reliance on OAT placement or in patient bed reduction will be ring fenced and invested in the development of community based services.

Priority 2: Supporting People’s challenging behaviour We are committed to the further development of dedicated community based positive behavioural support services (PBSS) across the C&M footprint, offering intensive support to avoid admission and facilitate discharge. We aim to support peoples challenging behaviour by :  Utilising the outcomes of the service developed and delivered successfully across Mid Mersey, exploring its transferability to the rest of the TCP.  Commissioning further support for people in their home and for families requiring psycho therapeutic intervention support (to compliment PBS) across the footprint.  Ensuring sufficient capacity to manage the increased number of individuals with complex needs and challenging behaviour that will be living in the community,  Developing skills to provide for the bespoke support needs of individuals with a forensic presentation or history of offending behaviour.  Development of Positive Behaviour Support framework including training for a wide range of providers

Whether these functions should be delivered by one team or aligned provisions is not determined at this stage.

Priority 3: Post Diagnostic Support for ASD /ADHD We have identified post diagnostic support for AD/ADHS as a service gap across C&M (section 3); the development of such services is cited in the “Think Autism” national strategy. Therefore as a TCP we aim to develop and commission a service that: • Focuses on augmented services and support for people once they have received a diagnosis. • The focus of this type of service model is community orientated prevention/integration and to avoid the deterioration of people’s Mental Health.

Priority 4 : Reducing Health inequalities There will be investment in Primary Care health checks / Acute Liaison LD Nurse and/or health facilitators in those boroughs that do not currently have this provision. This is to ensure that universal health services such as the Physical health needs of people with Learning Disabilities are addressed (including the cohort of people with LD/Autism 14-18 in transition requiring Health checks. We will also commit to implementing the findings of the

Mazar Report (2016) and local mobilisation of the national LeDer mortality review

Priority 5 : Supported Living Services/Accommodation There is a need for more Supported Living capacity which can manage individuals with complex needs and challenging behaviour. In particular the development of a core and cluster model providing private space as well as shared support which can be flexible dependent on need is vital for those individuals whose level of challenge is unpredictable. In addition we will need to support people with more complex behaviours including those who have been in contact with the Criminal Justice system. There will need to be market development activity to create a market of small niche providers across our footprint to manage people with extremely challenging behaviour.

Priority 6 : Short Breaks It is recognised by health and care commissioners that respite care and short breaks are an important part of the current provision available to users and carers. This provision can help to avoid the need for admissions to bed based care or the escalation of difficulties that could lead to care breakdown. As part of our developments a new model for short breaks will be developed across the TCP; subject to further consultation.

Priority 7: Workforce Development. We will ensure that our services invest in training for the direct care staff of the service. Where services have accepted that people with complex needs and challenging behaviour should be a priority they will ensure that all staff are competent in working with them, and are equipped to understand the behaviour and to respond appropriately.

Priority 8 : Advocacy We will review availability of Advocacy in line with Care Act responsibilities and the needs of the identified population

5.5 What services will you stop commissioning, or commission less of?

As a C&M TCP, we will : • Reduce our reliance on inpatient beds by reducing unnecessary admissions, OAT placements and length of stay. This can only be achieved once robust community services have been developed in line with this overall Transforming Care Plan • Reduce the number of people placed out of area, through the development of a repatriation process and good alternatives that are closer to home as outlined in section 3.15.4. Any resources saved by health partners as a result of the repatriation process will be reinvested in local community based services • Commission services that would be in line with the national guidance as listed in section 5.1 • Commission less Residential Schooling Placements. • Some local commissioners (not all) would stop commissioning respite beds in order to support the provision of crisis beds. • Undertake a review of models of delivery to allow for better usage – e.g. forensic support

5.6 What existing services will change or operate in a different way?

As a TCP we would expect to have a reduced number of inpatient beds and therefore aspire to provide a more wrap around service with facilities to step up and step down as required. Therefore local services will be required to adopt a more proactive approach utilising the Multi-Disciplinary Team /Care and Treatment Review model to optimise support to individuals who are deemed at risk of an inpatient admissions. This will require a significant

74 work with local health and social care providers at strategic and operational levels with a focus of enhancing resilience and effectiveness ultimately to negate admissions where appropriate and safe to do so.

We would encourage an integrated approach to commissioning services to reduce duplication of effort and allow for a whole systems approach with greater consistency in terms of costs and charges to Providers.

NICE guidance will be used to self -assess against pathways together with the development of ‘Always events’ to improve service users experience of care.

Transition has been recognised as a gap and will be a key focus for improvement – the use of the transition CQUIN will help to support this improvement. The Youth Mental Health Strategy will also support improvement.

The development of a Learning Disability CQUIN with providers will strengthen the infrastructure in universal services.

For those areas without any current out of area placements, consideration will need to be given in relation to the long term sustainability of maintaining the status quo.

Access to LD capital monies will support in improving the estate and environment in which people receive care.

Work collaboratively across the TCP to ensure that monies across the economy are used effectively for people; aiming to achieve an integrated approach depicted in the diagram below, based on the current Integrated Personal Commissioning Model being delivered by Cheshire West and Chester as part of a national provider pilot.

Commissioners will expect services to adopt a more integrated and multi-disciplinary team approach with colocation (where appropriate) with the relevant Local Authority Teams.

5.7 Describe how areas will encourage the uptake of more personalised support packages

The proposed model will be based on commissioning on individual outcomes rather than inputs, and shifts the emphasis away from systems and processes and onto the quality of the service and the impact on the individual.

Key to this will be skilling up staff within both statutory and third sector organisations to understand the available options and to ensure successful brokerage. In order to do this, we have aligned our current work into mutually re-enforcing components so that we can redesign the care model; the processes within it, the staffing structures, workforce development, system and infrastructural requirements.

Cheshire West and Chester will also build upon the work they have undertaken, as one of the first pilot sites in England to introduce Personal Health Budgets, to align to ongoing redesign of social care services in order to deliver this work. Based on this Cheshire West and Chester have a bold aspiration to offer all identified service users a personal budget by 2017. As the financial modelling exercise will be running alongside the development of the care model, we are currently undertaking a scoping exercise to understand the implications, constraints and potential of building a new financial model that moves away from silo block contracts towards framework agreements. This work will be supported alongside our work to

75 build and incentivise the provider market, and work in partnership with the voluntary and community sector.

At the heart of our commissioning approach, is a holistic and personalised care and support planning offer involving a different conversation between people and professionals, tailored to the individual’s level of knowledge, skills and confidence. The overall aim is to identify the health and wellbeing outcomes that are most important to the person, and ensure that the care and support they receive is designed and coordinated around their desired goals.

Personalised care and support planning is a meeting of experts where the person’s lived experience is valued equally alongside clinical and professional expertise. It builds on each person's strengths and personal resources rather than focusing only on their needs, ensuring that they are in the driving seat of decision making. The plans people develop will cover all their health and wellbeing needs will replace multiple and duplicative processes and bring all the care and support people need together through a single, person-centred and coordinated planning process which includes planning for the prevention of crisis and hospital based care.

Wirral will be seeking to increase the use of personal health budgets and will monitor this via the contractual process within the Quality Schedule. There may even be an opportunity to also monitor via the various funding panels that they currently operate.

To support the increased use of these we would ensure that there are easy read documents in place to support the use of this along with access to independent advocacy and advice. Many of the support requirements are detailed in the 2014 Care Act. Wirral Borough Council has increased the number of the Direct Payment provision with an externally commissioned service to complement its in house team. Numbers have increased across the whole sector by nearly 200 over the last 18 months. The council is ambitious to increase the number of Direct Payment recipients to a 1000 within a 12 months period

It should be noted that children and young people with a learning disability who are eligible for an Education, Health and Care plan should also be considered for a personal health budget, particularly for those in transition and those in 52-week placements. This process aligns with the ‘Local Offer’ developed for each area, which gives children and young people with special educational needs or disabilities and their families information about what support services the local authority think will be available in their local, including personal health budgets and integrated personal commissioning (combining health and social care)

Those children and young people who are eligible for continuing care (0-18) and have an Education Health and Care Plan will be able to consider the possibility of a personal health budget, including a direct payment where appropriate. Local areas are developing policies and protocols to support the roll out of personal health budgets attached to EHCP’s.

Most areas operate a SEND partnership board where personalisation and integrated commissioning for children with SEND is being developed. For example, via the Liverpool SEND Partnership, a subgroup of the Liverpool Children’s and Families Board, the development of personal health budgets and integrated personal commissioning of joint health and care packages is established. Packages for children and young people who are eligible for continuing care are already jointly commissioned. The Cheshire East SEND partnership board has a working group focussing on reviewing ‘Outcome Based Joint Commissioning Strategy’ with emphasis on use of Personal Budgets, Resource Allocation Systems, sufficiency of suitable places, review of ‘In & Out of Borough’ placements and

76 review of Transport

Each area has a mandated Local Offer which has been jointly developed between the Local Authority and Health, and details of available provision; including information on personal budgets is fully available.

Consideration of those children with EHC plans having personalised integrated budgets. Consolidate the use of integrated complex care budgets. Enhance the infrastructure in place for integrated budgets.

5.8 What will care pathways look like?

We recognise that our pathways of care will mean commissioning becomes transformational rather than transactional. In order to move to this position, we will have invested time and resources to manage the significant culture change that will be required.

By March 2019 we will have turned our vision and values into the qualities, behaviours and skills that create a care environment filled with confident and capable staff working with a diverse range of individuals, families and communities. We will have a completed a series of joint training sessions which will include health and social care staff with staff from the voluntary and community sector to co-design the future pathways of care.

Services /care pathways will not be defined by organisation but by need of the person and measured by the delivery of outcomes. There will not only be empowered staff but also empowered patients and carers with a clear understanding of what services are available and how they can be accessed using their Personal Budget.

We recognise that we need to agree a TCP wide definition for a ‘delayed discharge’ and the mechanisms that we can use to ensure that these are avoided. We also need to agree whether penalties will be imposed in the event of delayed discharges.

Pathways will be established for those children, young people and adults placed out of area, whatever the setting. There will be agreed input from local community services as appropriate to the needs of the individual and plans will reflect any risk factors associated with returning to area and/or living in a community setting.

Future pathways will focus on supporting people within their own community and reducing reliance on inpatient services.

NICE guidance and SAF will be used to benchmark current provision and gap analysis informing future commissioning and pathway development. 5.9 How will people be fully supported to make the transition from children’s services to adult services?

Our approach to this work will be for all those with learning disabilities and/or autism regardless of age so that we can work on intervening early and ensuring we get the best for the people we serve. It is clear that if we intervene in childhood we can prevent crisis and deterioration in later life.

The introduction of Education Health and Care Plans (EHCP) in 2014 will be further developed for children and young people aged 0-25, to provide the key vehicle in terms of supporting the planning of transition from children’s to adult services. All elements of a young person’s education, health and social care needs are defined and recorded in a single document that include outcomes to be achieved and provision to be delivered.

The EHCP will identify long term education and training outcomes for the young person to be achieved by the time they reach adulthood. The aim is to start identifying the most appropriate education and training, care and health pathways as part of the Preparation for Adulthood review process starting at age 14 taking account of the child or young person’s aspirations and abilities, and, for those with the most complex needs, to ensure planning is integrated across education, health and social care.

It is anticipated that at 16, at the end of Key stage 4, many young people will be able to secure their education and training outcomes by progressing onto a College course where any necessary additional support can be provided through a College based Plan. In addition, the implementation of personal health budgets, including the element of direct payments where appropriate, will enable improved choice that will transition from childhood into adulthood.

Locally some areas have integrated Departments to there is strategic and operational oversight of transitional processes i.e. St Helens have recently integrated Children and Young People’s Services and Adult Social Care and Health Departments into a single People’s Services Department. This will provide greater consistency moving forward. Other areas also have similar arrangements in place

For some of the C&M CCGs, part of CCG CAMHs transformation bids will be :  Seeking to change referral criteria, and promote early planning for, and partnership working with, adult services to ensure that there are no gaps through which children and young people are able to fall.  Looking to be look to be inclusive of Autism with challenging behaviour within an all age disability service by 2020

This will be particularly important around transition and will require us to develop robust transition protocols between children and adult mental health services, and the transition to an all-age disability service

Other local initiatives include: • Transition CQUIN • LD CQUIN • Integrated approach • Personal health budgets • Pooled budgets and jointly commissioned packages • Closer working – CCC and CHC

5.10 How will you commission services differently?

Across the C&M TCP our aim is to have:  More pooled budget arrangements.  Collaborative commissioning system approach  Commissioning on 3 levels as outlined in section 2.2  Outcomes based Commissioning.  Ensuring Social Value is intrinsic in the relevant services.  Greater consistency in terms of costs and charges to Providers.  Increased use of personal health budgets  Learn from Vision 2020 described below

Wirral Borough Council with its wider partners are working on Vision 2020, where a key strategy is “People with Disabilities lead Independent lives” The strategy sets out a 5 year vision for reduced dependency on traditionally commissioned services with people maximising the use of their locality assets and natural networks to act and be more independent.

5.11 How will your local estate/housing base need to change?

As a C&M TCP will establish a work stream that focuses on:  The development of an estates strategy between key partners .This will include a review of NHS /Local Authority/Housing and 3rd Sector estate.  Development of our housing needs, ensuring we have a rapid expansion and improvement in community provision that encompasses a range of supported living options and housing with accompanying care and support.  Developing accommodation options for people who need to be repatriated from secure settings.  More efficient Core and Cluster/Core and Flexi support needs to be considered.  More local community residential support for people with LD/ASD who exhibit more complex challenging behaviours.

LD Capital bids Recently Wirral have been successful in obtaining £1million pounds as part of a capital bid, from NHS England, this will be match funded by Wirral Local Authority.

The proposal will be to undertake the following project:  The extra care scheme consists of self-contained flats and care staff is based on site 24 hours a day to support the needs of the residents.  The schemes offer a real alternative to residential and nursing home care for older people and adults with learning or physical disabilities.

The project is an extension of the current programme to develop extra care housing units in Wirral with Strategic Housing Delivery Partners to support people to live independently. A current procurement exercise is with Housing colleagues to establish a framework for

79 delivery. This first stage is in progress with Wirral DASS and Housing ambition to deliver an additional 100 units of extra care over the period 2015-2017 which has already been granted capital funding of £4m. It is unlikely there will be any capital spends in 2015/16. Indications are that this number could be increased considerably with potential to increase up to 300 over the next 5 years, should more funding become available. This will contribute significantly to the shift required from residential and nursing care placements, to community based living options including supporting the need to develop alternative models of care for people with disabilities in supported living accommodation.

5.12 Alongside service redesign (e.g. investing in prevention/early intervention/community services); transformation in some areas will involve ‘resettling’ people who have been in hospital for many years. What will this look like and how will it be managed?

Cheshire/Wirral Local delivery system Currently 350 people with learning disabilities are placed out of the Cheshire/Wirral commissioning system footprint at a cost of £24million and this is an increasing trend due to lack of local services. If appropriate local services were available, this would reduce the demand for out of area placements, provide better solutions for individuals and reduce costs to the health and social care system.

Through developing community support, reducing inpatient beds and returning people to their home areas there will be a requirement for appropriate residential accommodation. To this end, a bid with the support of CWP, CWAC, West Cheshire CCG and Vivo Care Choices was submitted to NHS England for £483,000 to fund the refurbishment of ‘Bridge Meadow’ a former Cheshire West and Chester Council Children’s home in Ellesmere Port into three bespoke apartments to support people placed out of county due to lack of appropriate local provision to return and prevent others from being placed out of area.

The benefits anticipated are:  People with learning disabilities and/or autism are supported to live fulfilling lives in their community  People with learning disabilities and/or autism are supported in appropriate settings which are person-centred  People with learning disabilities and/or autism are supported at home with links to communities  Delivering a personalised pathway to enable people with learning disabilities and/or autism as individuals to maximise their potential in society.  Meeting needs of individuals with complex needs through offering high quality, accredited specialist local provision, tailored to their needs.  Enhanced assurance and accountability for commissioners that services are focussed on meeting the needs of individuals and achieve best value for money.  Supports the principle of the wider model in preventing hospital admissions through working in partnership to maintain people in their own home.  Value of commissioner spend is maximised to deliver positive outcomes across the pathway.

The bid has been approved in principle and we are awaiting confirmation of funding from NHS England.

Mid Mersey Delivery System Mid Mersey will making use of Dowries where appropriate and aim for the repatriation of out of area individuals using barriers tool and MDTs

North Mersey Delivery System There are currently 3 individuals in North Mersey delivery system who will need to be ‘resettled’. The commissioners have recognised the complexity of both the needs of these individuals and in having the appropriate provision established to meet need. In depth case reviews will be undertaken of these individuals to allow for commissioning the support they need to move closer to home.

5.13 How does this transformation plan fit with other plans and models to form a collective system response?

• Healthy Liverpool Programme and Shaping Sefton are the local transformation plans that will further support delivery of this agenda.

• Liverpool City Region plans will allow for commissioning on a larger geographical footprint when cost effective to do so.

• The NHS Planning Guidance for 2016/17-2020/21 mandates local commissioners to come together and develop sustainable plans with stakeholders.

• North West Clinical Networks currently implementing the findings of the C&M QSG Mental Health Thematic Review against the Mental Health Strategy 2016-2021

• National Autism Strategy, particularly the development of post diagnostic services.

• Valuing People Strategy and Death by indifference reports, particularly around the area of Health Facilitation.

• Wirral Vision 2020.

• Joint all age LD strategy

• Autism Strategy

• CAMHS Transformation Plan

• Crisis Care Concordat

• The plan aligns to all Local Authority’s approach and commitment to the Care Act particularly around prevention.

• National Autism Strategy, particularly the development of post diagnostic services.

• Mansell Report around supporting people with LD who exhibit complex challenging behaviours.

• Valuing People Strategy and Death by indifference reports, particularly around the area of Health Facilitation.

• Children and Families Act 2014 with accompanying SEND Code of Practice 0-25 years

Any additional information

6. Delivery Plans need to include key milestone dates and a risk register

6.1 What are the programmes of change/work streams needed to implement this plan? Cheshire and Merseyside TCP have identified a number of overarching work streams that are needed to implement our programme of work.

However it is acknowledged (section 3) that each local geographical area is at different stages of transformational development; therefore there cannot be a ‘one size fits all’ solution.

There must be local discretion as to the best way to deliver improvement according to local need. As such, each local delivery system will develop their individual delivery plans which will reflect the preferred models, local approaches and provide a suitable ‘fit’ in line with Building the Right Support (2015).

Workstream Co-Production Statement C&M Ambition Confirm and In the Northwest this really is a Central to the successful delivery challenge long term relationship not just of the C&M TCP plan will be the a one night stand’ ability to work in partnership with people with a learning disability and/or autism, their families / carers and other key stakeholders to deliver the transformation plan.

Service users are at the heart of our development and have coproduced our plans Quality Contracting, ‘’This is about our lives you Central to the delivery of this commissioning and must keep working with us. programme will be changing the finance Keeping doing what you’re way in which services have been doing and you will keep getting traditionally commissioned and what you are getting and that’s delivered. . This work stream not good enough’‘’ will take a whole system approach to how in the future ‘you should only buy services services can be commissioned that you would be delighted for and funded to provide a less a member of your family to hospital reliant more person- use’ centred approach

Oversee the shifting of resources ‘Transforming care must be from inpatient to community about social care too. We must provision, the development of look at the isolation and aligned or pooled budgets, and loneliness that cuts to care the shift in commissioning from a packages cause’ population basis to more personalised arrangements through personal budgets (including PHBs).

Workforce ‘Staying Healthy, Living Well, This work stream will deliver a development Being Safe-aren’t they what workforce development

we all want? We should all be programme across the footprint angry that there are such to underpin the transformation human rights and equality programme building upon the issues in 2016 that affect good practice already people with learning disabilities established in the footprint, such and their families as expert by experience autism awareness training as well as identify the new workforce ‘This is about death by development requirements indifference and health This will include the development inequalities for us all too’ of a sustainable and resilient workforce regardless of their employer, who is equipped and available to work effectively with this client group. Communication & ‘In the Northwest this really is a Work will be undertaken to Engagement long term relationship not just develop an engagement and a one night stand’ communication plan which ‘Green Paper consultation’ operates both across the footprint and at a local level. In the development of this plan consideration will be given to ensure that information is produced in an appropriate format in line with the Department of Heath’s Accessible Information Guidance. Accommodation and ‘’Transforming care is not just Accommodation strategy linked estates about the small number of to cohort, risk registers and bed people who live away from closure programme home: it is about all of us everywhere’’

Care pathway ‘keep doing what you’re doing Create a hub and spoke model. development to you’ll keep getting what you’re Agree system wide definitions for include: getting and it’s not good service specifications. I.e. service enough’’ specs for all ages of people with learning disabilities and/or ‘It has to be about what is autism; transition, 24/7 Creating a needed in our local provision/offer/ crisis support, sustainable communities that meet the access to main stream health Community service needs of people with learning services, health promotion and model disabilities and their families screening, Autism diagnosis & post diagnostic support, forensic Positive behaviour ‘Transforming care is about and CJ interface support/services social care as well. We must look at the isolation and loneliness that cuts in care Review transition protocol and packages cause’ strategy/early Children and Young intervention/alignment with People/ Transition ‘Some people should never be CAMH.) There will be improved closed to community teams. coordination between children’s Some people will need help and adult services around the Resettlement and support in their lives. You transition of children with a must be ready’ learning disability and/or autism, with better support to people with CTRs ‘This is not just about the bed a learning disability and/or autism closure programme or bed and their family and carers reductions. This must be about through this time us all. Developing Development and roll out of a Bed reductions communities, housing, leisure, comprehensive PBS service safer communities and across C&M building on education for us all’ exemplar work in Mid Mersey

If people are having a crisis 24/7 crisis support they should be able to stay Ensure discharge and bed closer to their community and closures are in line with not have to go far away-out of trajectories. Care closer to home. sight out of mind’ Resettlement of OAT in patient placements ‘Stop trying to fix the person. Help the person to grow in a Pathway development and place that works around them support from secure to non- as much as possible’ secure service provision.

‘If people are having a crisis they should be able to stay closer to their community and not have to go far away-out of sight out of mind’

‘It scares me that the Mental Health Act could be used even if I didn’t have an illness. I could be deprived of my liberty’ Reducing health ‘We have the right to be Access to mainstream services

84 inequalities treated the same as anyone i.e. Hospital passport, Physical, without a learning disability mental health and wellbeing and have access to services services, health checks, health when we need else’ action plans, mortality review and ‘LB campaign’ subsequent actions ‘LDSAF’

6.8 Who is leading the delivery of each of these programmes, and what is the supporting team.

As workstreams are still subject to consultation and agreement, no leads have been identified to date. However we anticipate that leads will come from across different sectors and organisations and be finalised in July 2016.

However as a TCP, stakeholder engagement has affirmed an agreement that where feasible and practical workstreams will be aligned to the 3 levels of commissioning and transformation outlined below:  within LA borough/CCG, (commissioning system)  adjoining CCG's/Boroughs e.g. inpatient facilities (across 1,2 or 3 commissioning systems) Whole footprint. (TCP)

Were feasible some workstreams will be undertaken across the Northwest in conjunction with Greater Manchester and Lancashire TCPs to ensure constancy and reduce duplication of effort

6.9 What are the key milestones – including milestones for when particular services will open/close?

Refer to milestones template submitted with plan

At this present time we are unable to identify when particular services will open or close as this will be subject to wider consultation, local commissioning intentions and approval of LD capital bid monies from NHS England.

We aim to deliver our aspirations with local commissioning delivery systems taking responsibility for delivery at a local level. It is important that local delivery systems have the opportunity to develop and coproduce their local plans in partnership with all stakeholders; including identification of key milestones for implementation

6.10 What are the risks, assumptions, issues and dependencies?

Refer to TCP Risk register submitted with plan

6.10.1 Key risks identified at this stage include:

 Inability to match fund transformational bids due to financial pressure within a number of organisations across the TCP footprint  A lack of robust outcome measures (possibly a knock-on effect from poor information systems)  Lack of easy access to financial information and limited engagement from finance

leads in Transforming Care to date  The prospect of a Liverpool City Region Devolution and a Cheshire Devolution, in changing geographical implications in commissioning arrangements  Commitment from all partners at a strategic level to put resources into delivering this plan  Limited commitment at this stage to ring fencing funding for learning disabilities for reinvestment within the system  Financial pressures on statutory organisations as well as third sector providers  Reduction in funding to peer advocacy services  Conflicting demands for many organisations alongside limited capacity  insufficient resources available to commission adequate levels of service to deliver the TC programme successfully  The level of financial commitment involved with implementing and delivering the Transforming Care programme.  Significant financial challenges across the local health and social care economy  The social care market for complex care and support may continue to stay the same; this could result in not enough capacity to repatriate the number of individuals encompassed within the plan.  if the local A&T bed base is further reduced, commissioners may be in a position whereby placements may have to be commissioned on a more reactive spot purchase basis, which predominantly denotes higher costs and also undermines the principles of Transforming Care  The length of time required to develop sustainable community-based alternatives to admission, particularly housing  Financial positions of many Local Authorities and their instability to financially support major change programmes  Commissioning for specialist services is done on a system wide basis rather than sub regional basis  Availability of suitable premises and skilled providers  The need to make sure that patients don’t experience increased restrictions by being placed in community settings  no control over admissions directed by the courts  Lack of infrastructure in the wider community to assist in safe discharge of people with offending behaviours

6.10.2 Assumptions:  People directly involved in the C&M TCP are committed to change  There is a level of consensus about what needs to change at a high level  There is significant, although not total, agreement between commissioners and providers about service redesign  There is a track record of effective joint working in different localities, although less experience of working across the wider delivery system footprint  All localities will want to retain a local flavour for their services to reflect local need

6.10.3 Dependencies:  Caring Together (Cheshire East/NHS Eastern Cheshire Clinical Commissioning Group)  Connecting Care (Cheshire East Council, Cheshire West and Chester Council, NHS South Cheshire Clinical Commissioning Group, NHS Vale Royal Clinical Commissioning Group)West Cheshire Way (Cheshire West and Chester, NHS West Cheshire Clinical Commissioning Group)Wirral 2020 (Wirral Borough Council, NHS Wirral Clinical Commissioning Group)  Integrated Personal Commissioning

 Development of Integrated Provider Hub Model in Eastern Cheshire and in South Cheshire & Vale Royal  Development of local housing strategies  Local authority devolution  Mid Mersey collaborative alliance

6.11 What risk mitigations do you have in place?

Risks will be mitigated under the auspices of the Cheshire and Mersey Governance arrangements via the C&M Transforming Care Partnership Board. Use of existing governance structures e.g. Integrated Personal Commissioning delivery group to monitor and manage the risks associated with the care model delivery and change in cultural practices.

A risk register and log will support in identifying and mitigating risk as the programme of work develops and will report by exception on a monthly basis to the TCP Board.

Flexible budget arrangements will support in sharing of any financial risks to programme delivery.

Although C&M NHS A&T bed capacity is showing declining rates of activity, such an ongoing reduction may put at risk the viability of the current patterns of provision were A&T units/beds are available within the footprint of each trust / commissioning system i.e. Cheshire, Mid Mersey, and North Mersey. The issue of viability will be considered as part of future planning within each local system.

Financial work to be undertaken to determine what is needed in terms of resources across the collective unit of planning in order to deliver the programme successfully. Any resource commitments will need to have full endorsement and approval from each respective CCG and LA within the TCP.

Commissioners will communicate with the market to ensure that the market is clear around expectations of services, in order to meet the needs of the local population.

Close monitoring and risk analysis of the bed usage of Byron Ward 5BP will continue as a collective across the system of planning.

Workforce capacity and demand work commenced and we will work alongside Health Education England and with colleagues across the North of England to ensure we tackle this issue at scale. Any additional information